The reaction I had to reading the prednisone literature when i was finally
diagnosed in 1993... "Osteoporosis, diabetes, hair loss, high blood pressure, frequent infections, mood swings,weight gain, cataracts, acne, insomnia"... was "Not no, but *hell* no!"
I refused to take it because of all the short and long term side effects. I figured I could just deal with the pain and the whole thing would eventually sort itself out. I kind of think of it as "the devil you know"- meaning I was used to being exhausted and in pain. Those were known entities. But osteoporosis and cataracts? Weight gain and acne that I couldn't control? I wasn't ready for that. So, I did not take anything, and I got sicker and sicker and sicker and nearly died. It did not help that I went to the rheumatologist who literally cussed me out for not taking the prednisone, without addressing my concerns and educating me. Finally, months later, and with a different doctor, my will was broken and I took the stupid prednisone. It saved my life. It also made my hair fall out, my face blow up, my skin look horrible, and I was so anxious i thought i would climb the walls (if I could just get out of the chair).
As soon as I had some energy, I started seeking out alternative medicine so i could do things to help me get off
the prednisone before it killed me!
So if you're sitting there with lupus not wanting to go on any meds because they are toxic (they are) or you think "I can take it"- you can't go on like this. don't be a hero. get some relief. chronic pain is tough on your soul and chronic inflammation is tough on your organs. you gotta get some relief.
After I got off the prednisone following about 9 months on it, I went for years just putting up with the pain and
inflammation (again, but I wasn't debilitated this time- yet) because i did not want to go back on the
prednisone. This time I knew that prednisone devil, and the lupus devil. And I still chose the lupus devil. That's how crappy being on prednisone is. Did I mention it tastes like rat poison?
After 16 years living with this thing i can tell you, it's not just going to go away by waiting it out, and
the inflammation is very dangerous. It can raise your blood pressure, send you into heart or kidney failure, damage your organs and put you at 18 times greater risk for stroke. i had 2 strokes in 2002. i am fully recovered now but the road was long
and hard and I'm still paying the bills on that one!
Yes, some of the drugs used to treat lupus are very toxic and can cause other diseases if you're on them long enough. But here's the thing- you can die from lupus, too, and a lot sooner than you would if you had instead been on the meds. My advice (to myself) When the lupus is flaring out of control, get on the meds, get the thing under control, then improve your diet, lifestlye, environment (workplace and home) and stress management and get back off the drugs.
I'm not a fan of taking pharmaceuticals, but it has become a necessary evil at points in my life. For those of us with painful chronic diseases who have to at least temporarily take something so we can get back on our feet and deal with this thing properly, maybe it will (literally) be an easier pill to swallow if you promise yourself that as son as you feel better, you will start seeking out some natural ways to heal yourself that you can do alongside the prednisone/ cellcept/ whatever you're taking, so that you waon't have to be on it so long that you develop lymphoma or something else gnarly (like unpayable credit card debt!).
We can get better. It's not all devils.
Monday, March 17, 2008
Monday, March 3, 2008
lupus- a laughing matter?
i've pretty much given up on people "getting it" if they haven't had some direct experience with lupus or something similar. i get tired of being judged or blamed for my illness, so i generally don't tell anyone I even have a chronic illness until I figure out they can be trusted not to say or do something hurtful/ idiotic.
it ticks me off that comedians use the word "lupus" as a punchline. they would never use the word cancer as a punchline.
i have heard the word stroke used as a punchline and i didn't think it was funny at all (of course i've had a stroke- that may have something to do with it).
maybe when someone asks me what my diagnosis is, I'll tell them I'm a comedian. that really should be a disability. noone normal does that for a living, trust me!
it ticks me off that comedians use the word "lupus" as a punchline. they would never use the word cancer as a punchline.
i have heard the word stroke used as a punchline and i didn't think it was funny at all (of course i've had a stroke- that may have something to do with it).
maybe when someone asks me what my diagnosis is, I'll tell them I'm a comedian. that really should be a disability. noone normal does that for a living, trust me!
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).
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
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
(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
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...
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