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
weight.
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
chips!)
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
Carla
Friday, February 22, 2008
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 vitacost.com
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...
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 vitacost.com
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.
http://www.the-waltons.com/lupus.html
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.
http://www.thesingingpatient.com
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.
http://www.the-waltons.com/lupus.html
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.
http://www.thesingingpatient.com
Friday, January 25, 2008
aspartame
some great articles on this blog about just how toxic nutrasweet (Equal, aspartame) is:
http://maintainwealth.blogspot.com/2008/08/aspartame-murders-infants.html
lupus survey
Someone on line posted some questions for a school project on lupus. Here are my answers...
1.What do you experience from this immune system
disorder that you might like to share with students
studying lupus?
Symptoms from lupus: weight loss, hair loss, very dry skin, lesions, digestive problems, loss of appetite,
menstrual irregularity (stopped for 18 months, then went heavy flow for 6 weeks before I finally went to
th eOBGYN for some provera... TMI? diarrhea too!), exhaustion, joint pain, mood swings, swelling, migraines, lack of sexual drive, depression, visual problems, peripheral neuropathy, stroke, kidney failure, pleurisy, anemia, shortness of breath, sjogren's, raynaud's, photosensitivity, intolerance to cold temperatures and loud noises, anxiety, insomnia, depression. (I have been struggling with lupus since 1992, so... long history)
symptoms from prescriptions: weight gain, moonpie face, ratty dry hair, mood swings, more insomnia, more
anxiety, sleepiness, more diarrhea. and abdominal pain and vomiting (from the chemotherapy). and poverty.
Emotions: grief, loss, anger, fear, feeling of having my youth robbed. stubbornness/ denial, resentment of "normal people," especially those who tell me "it could be worse" or try to find some way to blame me for my illness or tell me I'm imagining it (includes doctors), resolve, confusion, feeling overwhelmed, determination (trying all sorts of alternative means of getting better). relief found in using humor, journalling, talking to others who understand, thinking about something other than being sick and. or trying to get well.
financial: devastation. loss of job due to illness, mounting bills from doctors and credit cards (buying
prescriptions and paying living expenses). this happens every time i have a flare (3 so far). i did
finalyl qualify for social security but by the time that happened my benefits were down to $500 a month.
not to be ungrateful but...
reactions from the public: people staring at me, asking me invasive questions, blaming me for my own
illness (do you smoke? no... is it genetic? not really. "you're doing god's will do the devil is
attacking you." "you've got hidden sin so you're no longer under god's protection" ... pick one people
they can't both be right!). i have basically chosen not to tell people up front that i ahve lupus. there
is still too much stigma, too much fear and misunderstanding. i want people to know me first,
then, if they're trustworthy (meaning they won't judge me and ask a bunch of stupid or insulting questions) i
reveal my diagnosis. of course if i'm in a room full of lupus patients, then of course i tell them right
away. or, now, on my blog, which is not exactly secret...
spiritual growth: i have learned that lupus is basically a do-it-yourself disease. your quality of
life is largely determined by how willing you are to take control of your own well-being. being ill has
caused me to slow down, to be more judicious with my time and energy, get rid of toxic relationships (or
limit time with that person) basically i'm having to learn to quit putting my needs last. and if something
is bothering me, i can't afford to say nothing- it will literally make me sick.
Also, med students and doctors should know that it is very hard on one's self-esteem, especially a woman's, to lose their hair, suddenly gain weight and have ruddy skin and a moon face. This is why we don't want to take prednisone. For some of us, it causes horrible mood swings. Both these can be alleviated with diuretics and something like a low dose of attivan. Prednisone is so destructive that piling a little attivan on top is going to do more good than harm. Please don't condescend and treat us like little kids "well you *have * to take it.) Most of us know that. Just acknowledge that it sucks and that as soon as a better option comes along, you'll offer it. OK?
2.Can you put into your own words what it is like to have lupus.
I think I just did. It mostly sucks. But there are ways to make lemonade out of the lemons. It just takes persistent effort, and a conscious choice not to be a victim.
3.Have you had any special hobbies or special interests that you had to drop or change due to lupus?
If so, what are they?
aerobics - too harsh, aggravates joint and muscle pain
snow skiing - can't tolerate cold anymore
full-time work. this is also hard on the self-esteem (and of course pocketbook)
4.Describe an incident dealing with lupus that really made you think about having lupus.
I went to a psychologist (so i could yell at someone for an hour a week). Finally one day, after telling her the next alternative treatment I was going to try, she told me I needed to "accept my illness." I'm still not really ready to do that in some ways. I'm not in denial, I know it's there and I have to take my meds, and rest, and all, but I still believe and even know from experience that the right mix of acupuncture and stress management and strict diet can leave me symptom-free and looking and feeling good (it's just so hard to stick with, with pizza and ice cream and junk food in your face at every turn).
5.Who or what has influenced the way you have dealt with lupus?
the book "love medicine and miracles" and
"anatomy of an illness"
and the movie "patch adams"
6.Has having lupus altered the way you perceive life and people in general? Has this adjustment changed the
way you view daily routines?
It has made me far more compassionate. When i was diagnosed, i was only 25, and of cousre
reacted like most folks initially "why me??" but you start to realize that there is so much illness
and suffering in the world, that you eventually think "why not me- the odds were pretty good something would
happen to me!"
It has made me take responsibility for my well-being, and to accept the consequences of my own actions. If I overextend myself, i pay for it right away.
It also has made me re-think everything in our culture. I don't believe that all illnesses are caused by germs and genes. I don't think everyone with "MD" after their name is a genius, or even necessarily up to date on lupus, because who ahs the time with all the stupid paperwork they have to do (not to mention all the drug reps they have to flirt with). I treat them as consultants, not Gods. The final decision on everything rests with me.
I think some - many- diseases are results of our toxic lifestyles, with not enough joy, or love, or nutritious natural food or clean air and water or exercise. We seem to be having an autoimmune epidemic right now. why is that? is it our food? maybe eating crap all day then sitting on our butts 24/7 isn't good for us? maybe being under constant mental stimulation
and stress is not healthy either? certainly the state of our emotions affects the state of our being, and our bodies.
why does our medicine only address symptoms and not the root causes?
i try to be more mindful of what i put in my body, and i take greens, fish oil, a multi vitamin, and milk
thistle every day to counterbalance some of the toxicity of the drugs I'm still on. I also allow myself to sleep more than "regular" people. I just have to.
And I have learned to keep this thing to myself so I don't have to constantly defend myself for sleeping a lot, not working full time, having to cancel social engagements, etc. People just can't understand if they haven't been there.
7.Has the medical profession been able to offer relief, aid, or service in dealing with lupus? If so,
how?
The medical profession, meaning our "official" medical profession, offers me drugs and tests to monitor and
control my condition. and i pay for it out the wazoo. and for all it costs, they are truly limited in what
they can do. they cannot cure us. Some of them make deadly mistakes and some are very rude. (and some don't wash their hands...) Some are kind. One cussed me out for not taking prednisone. Another "fired" me for "questioning her authority" (I used to bring highlighted articles in and ask her about them). I've had all flavors.
so i spend a lot of money out of pocket (or should i say on my credit card) so i can do better than just have a "remission" on paper; not just get the test numbers to improve, but to actually feel better, to feel like doing something,
and not literally be crawling up the stairs to do it.
so, yes they help me by getting the flare under control and keeping me from dying. then in order to
get from just "not dying" (but sleeping all the time, having lots of headaches and no energy) to actually
"living" i have to go get acupuncture, chelation, and do extreme diet modification and carefully controlled
exercise. either way, it makes for a full time job, maintaining my health.
the one big change lupus has made in my life is that i no longer am an employee. it is not an option for me
to work 40 hours a week. i would collapse on the 3rd day. so i work for myself. I write funny songs (some
of them about having lupus, and i call myself "the singing patient") and i perform once in a while. it's
very rewarding, being able to laugh about all this, and to help others do the same. i don't miss working
retail, or begging for a day off, or having my boss hit on me. not even for a minute... So, there's my lemonade :)
1.What do you experience from this immune system
disorder that you might like to share with students
studying lupus?
Symptoms from lupus: weight loss, hair loss, very dry skin, lesions, digestive problems, loss of appetite,
menstrual irregularity (stopped for 18 months, then went heavy flow for 6 weeks before I finally went to
th eOBGYN for some provera... TMI? diarrhea too!), exhaustion, joint pain, mood swings, swelling, migraines, lack of sexual drive, depression, visual problems, peripheral neuropathy, stroke, kidney failure, pleurisy, anemia, shortness of breath, sjogren's, raynaud's, photosensitivity, intolerance to cold temperatures and loud noises, anxiety, insomnia, depression. (I have been struggling with lupus since 1992, so... long history)
symptoms from prescriptions: weight gain, moonpie face, ratty dry hair, mood swings, more insomnia, more
anxiety, sleepiness, more diarrhea. and abdominal pain and vomiting (from the chemotherapy). and poverty.
Emotions: grief, loss, anger, fear, feeling of having my youth robbed. stubbornness/ denial, resentment of "normal people," especially those who tell me "it could be worse" or try to find some way to blame me for my illness or tell me I'm imagining it (includes doctors), resolve, confusion, feeling overwhelmed, determination (trying all sorts of alternative means of getting better). relief found in using humor, journalling, talking to others who understand, thinking about something other than being sick and. or trying to get well.
financial: devastation. loss of job due to illness, mounting bills from doctors and credit cards (buying
prescriptions and paying living expenses). this happens every time i have a flare (3 so far). i did
finalyl qualify for social security but by the time that happened my benefits were down to $500 a month.
not to be ungrateful but...
reactions from the public: people staring at me, asking me invasive questions, blaming me for my own
illness (do you smoke? no... is it genetic? not really. "you're doing god's will do the devil is
attacking you." "you've got hidden sin so you're no longer under god's protection" ... pick one people
they can't both be right!). i have basically chosen not to tell people up front that i ahve lupus. there
is still too much stigma, too much fear and misunderstanding. i want people to know me first,
then, if they're trustworthy (meaning they won't judge me and ask a bunch of stupid or insulting questions) i
reveal my diagnosis. of course if i'm in a room full of lupus patients, then of course i tell them right
away. or, now, on my blog, which is not exactly secret...
spiritual growth: i have learned that lupus is basically a do-it-yourself disease. your quality of
life is largely determined by how willing you are to take control of your own well-being. being ill has
caused me to slow down, to be more judicious with my time and energy, get rid of toxic relationships (or
limit time with that person) basically i'm having to learn to quit putting my needs last. and if something
is bothering me, i can't afford to say nothing- it will literally make me sick.
Also, med students and doctors should know that it is very hard on one's self-esteem, especially a woman's, to lose their hair, suddenly gain weight and have ruddy skin and a moon face. This is why we don't want to take prednisone. For some of us, it causes horrible mood swings. Both these can be alleviated with diuretics and something like a low dose of attivan. Prednisone is so destructive that piling a little attivan on top is going to do more good than harm. Please don't condescend and treat us like little kids "well you *have * to take it.) Most of us know that. Just acknowledge that it sucks and that as soon as a better option comes along, you'll offer it. OK?
2.Can you put into your own words what it is like to have lupus.
I think I just did. It mostly sucks. But there are ways to make lemonade out of the lemons. It just takes persistent effort, and a conscious choice not to be a victim.
3.Have you had any special hobbies or special interests that you had to drop or change due to lupus?
If so, what are they?
aerobics - too harsh, aggravates joint and muscle pain
snow skiing - can't tolerate cold anymore
full-time work. this is also hard on the self-esteem (and of course pocketbook)
4.Describe an incident dealing with lupus that really made you think about having lupus.
I went to a psychologist (so i could yell at someone for an hour a week). Finally one day, after telling her the next alternative treatment I was going to try, she told me I needed to "accept my illness." I'm still not really ready to do that in some ways. I'm not in denial, I know it's there and I have to take my meds, and rest, and all, but I still believe and even know from experience that the right mix of acupuncture and stress management and strict diet can leave me symptom-free and looking and feeling good (it's just so hard to stick with, with pizza and ice cream and junk food in your face at every turn).
5.Who or what has influenced the way you have dealt with lupus?
the book "love medicine and miracles" and
"anatomy of an illness"
and the movie "patch adams"
6.Has having lupus altered the way you perceive life and people in general? Has this adjustment changed the
way you view daily routines?
It has made me far more compassionate. When i was diagnosed, i was only 25, and of cousre
reacted like most folks initially "why me??" but you start to realize that there is so much illness
and suffering in the world, that you eventually think "why not me- the odds were pretty good something would
happen to me!"
It has made me take responsibility for my well-being, and to accept the consequences of my own actions. If I overextend myself, i pay for it right away.
It also has made me re-think everything in our culture. I don't believe that all illnesses are caused by germs and genes. I don't think everyone with "MD" after their name is a genius, or even necessarily up to date on lupus, because who ahs the time with all the stupid paperwork they have to do (not to mention all the drug reps they have to flirt with). I treat them as consultants, not Gods. The final decision on everything rests with me.
I think some - many- diseases are results of our toxic lifestyles, with not enough joy, or love, or nutritious natural food or clean air and water or exercise. We seem to be having an autoimmune epidemic right now. why is that? is it our food? maybe eating crap all day then sitting on our butts 24/7 isn't good for us? maybe being under constant mental stimulation
and stress is not healthy either? certainly the state of our emotions affects the state of our being, and our bodies.
why does our medicine only address symptoms and not the root causes?
i try to be more mindful of what i put in my body, and i take greens, fish oil, a multi vitamin, and milk
thistle every day to counterbalance some of the toxicity of the drugs I'm still on. I also allow myself to sleep more than "regular" people. I just have to.
And I have learned to keep this thing to myself so I don't have to constantly defend myself for sleeping a lot, not working full time, having to cancel social engagements, etc. People just can't understand if they haven't been there.
7.Has the medical profession been able to offer relief, aid, or service in dealing with lupus? If so,
how?
The medical profession, meaning our "official" medical profession, offers me drugs and tests to monitor and
control my condition. and i pay for it out the wazoo. and for all it costs, they are truly limited in what
they can do. they cannot cure us. Some of them make deadly mistakes and some are very rude. (and some don't wash their hands...) Some are kind. One cussed me out for not taking prednisone. Another "fired" me for "questioning her authority" (I used to bring highlighted articles in and ask her about them). I've had all flavors.
so i spend a lot of money out of pocket (or should i say on my credit card) so i can do better than just have a "remission" on paper; not just get the test numbers to improve, but to actually feel better, to feel like doing something,
and not literally be crawling up the stairs to do it.
so, yes they help me by getting the flare under control and keeping me from dying. then in order to
get from just "not dying" (but sleeping all the time, having lots of headaches and no energy) to actually
"living" i have to go get acupuncture, chelation, and do extreme diet modification and carefully controlled
exercise. either way, it makes for a full time job, maintaining my health.
the one big change lupus has made in my life is that i no longer am an employee. it is not an option for me
to work 40 hours a week. i would collapse on the 3rd day. so i work for myself. I write funny songs (some
of them about having lupus, and i call myself "the singing patient") and i perform once in a while. it's
very rewarding, being able to laugh about all this, and to help others do the same. i don't miss working
retail, or begging for a day off, or having my boss hit on me. not even for a minute... So, there's my lemonade :)
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