Wednesday, February 27, 2008

Lupus and weight gain

I was just interviewed for a magazine for an article on lupus and weight issues.

1)Are you generally happy with your weight?

of course not~! i'm a woman!!
there was a point where i was too thin which i didn't
mind except for i had no butt and i could not sit
compfortably anywhere.

2) How do you manage your weight? Are you able to exercise/pursue physical activity?

right now i can. i have been to weak to do so before.
but i have to be careful about not pushing too hard.
it is a delicate balance. if i work out too hard, then
i end up exhuasted for several days, and unable to
work out at all, or even do my normal routine. in
fact, a vigorous exercise routine was part of the
stress that led to my last flare, which includes
kidney failure. so i am trying to be sensible, which
is not easy when you want to lose weight, and
carefully work my way up to sustaining 30 minutes of
activity at a pace that breaks a sweat and improves my
cardio system. lupies are very vulnerable to heart
disease. i also lift very light weights. i do lots of
repetitions of very low weights. then i get the
benefits without major stress on my system, the kind
that sets of fibromyalgia. and i always stretch!

you have to start where you are. when i had a stroke
in 2002, i had no balance and was very thin and my
legs were sdwollen from kidney and congestive heart
failure. i could nto leave the house for a month
because i could not get up and down the one stair to
go outside. i used a cane. i started regaining ym
strength in the pool. i'm a very good swimmer, and it
made me feel better to be able to swim like a fish
even though i could barely walk on land. when i
started walking, i set very small goals: walk 3
minutes today. then 4, 5, 6, et.c

3) Is there a particular weight at which you notice
more flare-ups?

for me, it'sthe other way around. i know i'm starting to flare
up because i'm either losing weight without trrying,
or i'm suddenly holding water in my legs and can't see
my ankles, so i know my kidneys are failing again,.

4) How does your doctor help with weight management?

my rhuem is too busy trying to quell the disease to
worry about my weight. since i'm not obese, an extra
15 pounds is considered a vanity issue by most docs.
however when i had a lot of fluid in my legs, the
compression hose helped push it out, and i had a DO
who prescribed diuretics.

i have gone to various alternative practitioners over
16 years- the DO, several acupuncturists, some chi
gong practitioners, and an MD who also does
nutritional advice, and they all tell em to go gluten
free. it is not easy and i fall off the wagon, but
when i am gluten free i ahve mroe energy, fewer
symptoms, and lower weight. avoiding binging on salt
and sugar and quitting soda also helps.

5) Do you have any self-discovered tips for people with
lupus that might help them feel better psychically
or psychologically regarding their weight?

the serenity prayer

remember "i am not my body"

know there are things we can do to improve the situation

don't wear tight clothes or ugly seats or PJs all the
time. if you've gained a size and can't do anything
about it right now because you have to take
prednisone, or whatever, then don't punish yourself
for it. accept that you are where you are right now
and get yourself somthing comfortable and flattering
to wear.

do some self-care, a facial, paint your toes, get your
hair done. don't let yourself go completely. show yourself some love.

smile. the fastest face lift there is.

surround yourself with people who accpet you for who
you are, no matter how you look. even if those people
are the furry variety (cats and dogs).

Friday, February 22, 2008

Food vs. drugs

At the risk of alienating anyone... here's my opinion
(again), after having read many books, and
having felt the amazing effects of diet modification
on my own health:

you can find books that say there is no scientific
proof that food hurts or helps, written by MDs, and
you can find books that say food is an essential
component, even a miracle cure, also written by MDs.

You can bet that all money that goes to research via
the LFA or the ALR is going towards gene/
pharmaceutical research, and *not* towards seeing if
tumeric or garlic or anything else the drug industry
can't patent and make a buck off is of help in
alleviating symptoms. Do I think the LFA or the ALR
are corrupt in their motivations? absolutely not.

But conventional MDs, medical schools, and pharmaceutical
companies are inseparable. there reason there is no
scientific evidence is that the trials are conducted
by drug companies. why would they study whether food
might do the trick? there is virtually *no* training
in nutrition in medical school. I find that appalling.

Point being, there are 2 schools of thought out there
amongst doctors. Those who go with the flow, and just
treat with drugs and surgery, and treat the symptoms.
And those who are more forward thinking/ open minded,
use drugs and surgery and also include things like
supplements, acupuncture, massage, allergy testing,
and diet. they are all MDs. their opinions hold equal

I want to feel as good as possible and have a full
life, and be on as few drugs as possible, so I'm
willing to change my diet, even though it's not easy,
and i miss certain foods (esp diet soda, chocolate, and potato

There are more than a few books out there on food and
healing, a more recent (and best-seller) being "Eat to
Live" by Joel Fuhrman, MD. I'm planning to be one of
his patients, but it's expensive and they don't take
insurance. He's in NJ, near me. so I'll just read his
book and try and follow the suggestions on my own, and
let my rhuem. and neph. and the lab tests help me wean
off the drugs this time, instead of having 2 primary
docs (last time i had a DO, a primary and several
specialists, and an acupuncturist; time before that i
just had a rhuem and a MD who did diet and chelation.
i move a lot- lupus has made me a bit of a homeless
person at times, wearing out my welcome with friends
and family, sleeping in my van, racking up debt
renting an apartment while paying medical bills and not being able to work a full-time job, etc.).

I have had years of remission, drug-free, after having
a stroke, kidney failure, etc. and being on 9 drugs. I
generally relapse when i stop eating well and "do too
much," and several big life stressors converge (death
in family, moving, planning wedding, long trip,
medical debt, etc.)

Anyway, I'm all about staying solution-oriented.
wishing you all the best health we can attain

How Not to be Completely Exhausted

Someone asked about boosting energy when you have lupus (SLE).
I've tried many things over the 16 years of having
this lupus follow me around (and sit on me like a
hippo). Really, these tips apply to anyone, even healthy people.
Here are some things i've done:

1- know when to quit. when i feel good, i tend to
overdo it (start cleaning up all the piles in the
house, and keep going forever til i drop), then end up
in bed for several days.

2-take as little painkiller as is effective. if i can
take 1/4 or 1/2 or a percaset for pain, i'll be less
groggy/ draggy.

3- drink less caffeine (yes you're more tired for the
first few days, but it makes your energy fluctuate big
time, then makes it hard to sleep). i've given up on
eliminating it completely, but i just have 1 glass of
green tea when i get up, and that's it.

4- eat less sugar. also sends your energy all over the
place. i have come to like stevia (acquired taste) adn
xylitol (nicer taste), both natural plant derivatives
with no calories. i was on a candida (anti-yeast) diet
for 1.5 years, and i felt amazing. then i fell off the
wagon... right now i'm doing the "fat smash diet" from
celebrity fit club, which i did last year, adn the
first phase is eating nothing but whole foods- fruit,
veggies, yogurt, oatmeal.

5- learn to meditate, if only for 5 minutes a day.
thinking takes energy.

6- find a good acupuncturist to restore your Chi (life
force/ energy). this has been really effective f or
me. ask around for a good one, or look for one who is
chinese-trained and also does herbs. even if you never
do herbs (i don't take chinese herbs), it says a lot
about their training.

7- Chi gong is suppose to be incredibly effective as a
self-help energy thing.

8- in 94 and 02 i had a series of chelation treatments
to remove the heavy metals in my system and i felt
like wonder woman.

9-exercise. the trick to this is to do enough to get
your heart rate up, but don't work so hard that you
set yourself back (see #1, know when to quit). a
reasonable amount of exercise (20-30 minutes on the
treadmill, or outside if you're in a decent climate, 5
days a week, for example. you can start with 10 if 20
is too much, and work your way up over time).

10- take digestive enzymes to help you break down your
food and get the nutrients from it. Udo's brand is
very popular. you can get at a health food store or
cheaper at

11- take 1 tbsp of pure, mercury free fish or flax oil
daily. this helps with mood and inflammation.
Barlean's is very popular and recommended to me by an
MD. vitacost or health food store.

that's all i can think of for now...

Monday, February 4, 2008

We need a celebrity to "admit" to having lupus

I'm literally sick and tired. I have lupus. And the last thing I need is to hear that annoying fictitious "Doctor House" tell all of America (and Britain) that "It's not lupus. It's never lupus."

For millions of people around the globe, it *is* lupus. All day, every day, it's freakin' lupus. Pain, fatigue, even organ failure and death.

We need a successful celebrity to "come out of the closet" and "admit" to having Lupus. It has been so helpful in terms of public awareness and removing stigma from diseases such as Parkinson's (Michael J Fox, Kathryn Hepburn), Cancer (long list here, including Sheryl Crow and Lance Armstrong), Muscular Dystrophy (Jerry's kids- as in Jerry Lewis' annual telethon).

Recently, Oprah revealed she has a thyroid problem, and told folks she had been fighting fatigue and weight gain as a result. Apparently, this is a big deal in Hollywood, as celebrities keep illness a big secret. Bad for the image. And probably also makes it hard to get work.

As a "local celebrity" myself (a performing songwriter and humorist), I also have been hiding my diagnosis of lupus for most of the time since I've been diagnosed (1992). I have since discovered several other peers in the world of acoustic music who actively tour and are very secretive about their chronic illnesses.

Why? 2 reasons, i believe. 1) you don't want people to look at you and see the disease. you want them to look at you and see you, or your art, or you through your art. 2) fear of not getting hired because folks are afraid you wont' make it to the gig.

Something like a major diagnosis makes for great gossip fodder and does the equivalent of getting on the front page of The National Enquirer, even for us minor celebrities. Even if your fan base is only 100 or 100 or 10,000 people, if you're on stage, it's the same issues as if you were Oprah, just on a smaller scale.

I keep hoping some big celebrity will come out and talk about having lupus. So far here's what I've discovered:
1) Flannery O'Connor, fantastic writer, died of lupus in 1964.
2) Rapper/ Music Producer J Dilla/Jay Dee died of lupus in Feb 2006
3) Sharon Stone did an auction of fancy handbags to raise funds and awareness for lupus. her sister has lupus. This only sort of counts, because it's much easier to admit publicly to your sister's illness than your own. You just look like a healthy saint, rather than a famous sufferer.
4) James Garner (the Rockford Files) has a daughter with lupus (not Jennifer Garner). see #3.
5) Anna Nicole Smith may have had lupus. That would explain a lot. And would certainly put a very bad light on her tanning habit, worst thing you can do with lupus.
6) Michael Jackson may have lupus- but probably just the skin lupus, as opposed to systemic, which affects all organs.
7) Mary McDonough, "Erin" from "The Waltons." Ironically, she was asked to be celebrity spokesperson for the Lupus Foundation, even though she did not have Lupus. She later developed lupus.
8) I nearly forgot about Millie the dog, of White House fame from George HW Bush I era (1988-1992)- yes animals also get lupus (and cancer, and leukemia, and AIDs).
9) Seal (the singer) had discoid (skin) lupus (same as Michael Jackson), which explains the scars on his face and also his hair loss. Fortunately, bald is a perfectly good look on him...
10) Richard Dreyfuss' first wife
11) Mercedes Yvette, runner up on season 2 of America's Top Model
12) Backstreet Boy Howie D's sister, Caroline, died from lupus
13) Wayne Newton's sister-in-law
14) American Idol contestant (2007) Leslie Hunt, who made it to the top 20 finalists. I think it was quite a risk for her to come out and talk about having lupus before she made it to say the top 4 or 10. But then, if she had waited, she may have been voted off before she had a chance to say anything. Kudos to you, Leslie, for getting so far while living with lupus, and for not being afraid to talk about it.
15) Dani Miura, Actress, To Catch a Predator (she played the 11-year old "bait" on 3 episodes, where they go after sexual predators)

It's a start. But I'm not sure how much press an author who died 4 decades ago, someone's sister, someone's daughter, and the former White house dog are going to get. And having an alleged pedophile and a Penthouse drug-addicted flake on your side (God bless her soul) is not so helpful in lending legitimacy to this awful, ravaging, painful, serious disease. Most of us are treated like we're hypochondriacs for the first year or so of our illness, until they finally figure out what we have. Even Anna Nicole hid her diagnosis, and did not want it revealed, even after her death, as she "did not want to be remembered that way."

I think we need someone with credibility and direct experience with the disease to come out and say "This is real, people."

I'm not famous, but I'm trying to do my tiny part by "coming out" and talking about it.
But what if someone really charismatic, someone loved by the public like Oprah or Steven Colbert or Will Farrell or Jennifer Aniston (God forbid- I do not wish this illness on any of them!) were to come out and talk about trying to maintain a career while struggling with lupus? (probably won't happen, because I'm not sure it's possible to maintain that kind of schedule if you have lupus! but if you developed lupus *after* becoming famous- then came out publicly- like Michael J Fox did with Parkinson's- that would be amazing).

Hey maybe Dumbledor will come out and admit to having lupus!
Or how about Darth Vader? or Luke Skywalker- that would be better. Darth is too misunderstood. How about Patrick of Spongebob fame? He seems to sleep a lot... (here's wishing on a "star.")

Better yet, once the writers come off strike, they need to write in "Doctor" House as having lupus. Oh yeah, that would be poetic justice.