Lupus- not just a punchline on House, MD

Lupus- it's not just a punchline on House, MD.

This infographic brought to you by the Lupus Foundation of America. Visit them at lupus.org.
Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get Carla's book! http://tinyurl.com/348hroc

Growing Back that Gorgeous Head of Hair

A friend wrote me to ask my advice about her thinning hair. As you can imagine, losing your hair is never easy, and when you're a woman is devastating. I've lost my hair three times now during lupus attacks; sometimes most of it, sometimes just 2/3 of it. It's a big problem with lupus patients (most of whom are women, by the way), so I wanted to share our conversation with all of you.

Hi Carla,
Hope all is well with you and Joe.

After seeing my rheumatologist, he wants to put me on Plaquenil, mostly because I complained of recent onset of thinning/loss of hair which is freaking me out. But then I read about Plaquenil and its side effects and really freaked out. Would appreciate any insight if you have it if you've ever been on this drug and any comments you care to share.

My dermatologist had suggested Rogaine but my rheum said I'll be stuck on it for life (and it's expensive) and it only works "less than 60% of the time" according to its own website. He suggested my complex autoimmune disease along with my hypothyroidism (which is being monitored and medicated) are most likely the cause (and genetics, of course, like duh….).

Any insight?
Best,
(name deleted)


hi there-

Good to hear from you. Yes, I have a little experience with placquenil and a lot of experience with hair loss (and, happy to say, hair regrowth).

Placquenil. You probably know this but it's an antimalarial and they don't know why it works on lupus, but it does help with skin and joint problems, so they use it. I was on it for about 6 months back in 1994, but because of the risk to eyesight (possible blindness) i just couldn't make myself stay on it. I had no problems with it during the time i was actually on it.

I have no knowledge about rogaine, but I'm not a fan of anything that I have to stay on for life.
especially with such a low success rate.

Is hair-thinning one of the side effects of your hypothyroidism and/ or meds for that?

If you're looking to improve your hair health, I would go at it from a nutritional angle rather than throwing drugs at it. Doctors in general only have 2 ideas: drugs and surgery. So, I'm not surprised he offered you drugs. He probably thinks that is his job: diagnose and prescribe.

Nutritionally, I'm a big fan of ground flaxseed. I put it on smoothies, on top of salads, in (dairy-free) yogurt. Flaxseed will most definitely make your hair grow, nice and healthy. I actually find organic flaxseed at my local stop n shop. Back when I was a serious classical guitar player, I used to eat jello because the gelatin made my nails strong. That would probably work on hair as well. It is not vegan. Gelatin is made from horses. Just FYI. Vitamin E is another skin/ hair/ nail- benefiting supplement. Seeing results with your hair can take up to 6 weeks, so it will take consistency and patience.

One other thought- have you ever done an elimination diet?
7 days with none of the top allergens in your diet?
gluten dairy, soy, eggs, corn, yeast, and peanuts. Some people are sensitive to soy, so you can also cut that out.

Food allergies are common with autoimmunity, and if you eliminate the offending foods, the autoimmunity quiets down, and as a result your hair health will improve as  your overall health improves. As long as I stay gluten-free and dairy-free, my lupus blood tests are negative and I have no headaches, no joint swelling, very few tendon problems (I think sometimes the dairy sneaks into my food when I eat away from home, and dairy causes my tendon problems). Eating allergy-free has improved my health and quality of life tremendously.

Here's an article by Dr Mark Hyman that I like very much- 9 steps to heal autoimmune disease:
http://drhyman.com/blog/conditions/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

Hope some of this is helpful to you-
Happy Holidays!
Carla

Carla Ulbrich
The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________
www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient
get Carla's book! http://tinyurl.com/348hroc

Lupus and Marriage

Dear Carla,

        My Girlfriend has been suffering from Lupus (SLE) for 3 years and she is about 18 years old.

        She was suffering from severe joint pain for a year. She has recovered much over the past 3 months, and now she is able to stand on her legs but can't walk.

        I just want to know: can a patient suffering from SLE get married?  Are there any problems that might occur in her married life in the futute? Or are there any problems caused to her reproductive system? Thank you.

Hello,
and thank you for writing in.
I'm sorry to hear of the troubles your girlfriend is having.

Can someone with SLE get married?
Well, yes, anyone with a disability can get married.

Will there possibly be issues that come up that would not be there if the SLE were not there?
Yes. For starters, someone with a chronic painful disease is going to need support. Emotional and sometimes physical help doing things. You may want to consider visiting some lupus support groups if there are any in your area, so you can talk to some other spouses of people with lupus to find out how they handle being the partner of someone with a chronic illness.

What about sex? You didn't ask that specifically, but it is part of marriage, normally. Being in pain and exhausted can lower the desire. And also there can be discomfort for the woman that can be helped by a personal lubricant (for example, KY Jelly or Vagisil). Sorry if that's embarrassing, but it's an important issue.

Finally, regarding reproductive issues. It is possible to have children if you have lupus, but it is riskier. There are more miscarriages in women with lupus, and also sometimes being pregnant can cause the lupus to get worse. But there are women who have lupus who have successfully and joyfully had children. (Specifically, author Sara Gorman and blogger Christine Miserandino are both lupus patients who have successfully and happily had children after developing lupus themselves).

Because lupus causes fatigue, it would probably be wise for her to either have a job or to have children, but having both is probably too much stress to have and also to be healthy. Lupus is aggravated by stress.

I'm not clear as to whether she's being treated at all- is she on any medication? Is she under a doctor's care? Lupus doesn't just get better all on its own like the flu or a cold. It's a serious matter and she need to see a doctor regularly to get blood tests to make sure her internal organs are okay.

Finally, I want to encourage both of you to look into some dietary changes for her. Because it sounds like there hasn't been as much improvement as you'd like (she can't walk still), it would be worth trying an elimination diet for one week: have absolutely no gluten (nothing with any wheat or oats or rye) and no dairy (milk, butter, cheese, ice cream, yogurt). On day 8, eat a normal amount of gluten and dairy, and see how it affects you. If she feels better on days 3,4,5,6,7 and worse on day 8 and 9, you will know you can improve her health with this diet change. Being gluten-free and dairy-free has dramatically improved my health.

I've got a lot of information about the things I've done to improve my own health since being diagnosed with lupus in 1993. You can either read it in my book http://tinyurl.com/348hroc , or have a look at my blog http://lupusandhumor.blogspot.com/ .

I wish you both all the best-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

www.youtube.com/user/carlaulbrich - funny songs

www.linkedin.com/in/carlaulbrich

www.twitter.com/singingpatient

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get Carla's book! http://tinyurl.com/348hroc

Lupus and sleep

Question:
Does lupus cause extreme need for sleep?

{This was so succinct I did not know whether they were asking on their own behalf and they were just too tired to type anything further... or whether they had a friend or relative show sleeps a lot and they were either concerned or suspicious. So I answered it assuming they were asking on their own behalf.}.
 
Hello-

Thanks for your question.
Yes lupus causes fatigue, sometimes extreme fatigue, and definitely requires that you get plenty of sleep, more sleep than you normally would, especially when the lupus is "flared up" (really active).

If you can get the lupus under control, you may not need quite the large amounts of sleep you do when you're flared up. But it is very important to get as much sleep as you need when you have lupus.


Allow me to also point out there is a trap of sleeping to avoid things, because you're depressed. Only you can really know when you've crossed the line between taking care of yourself and avoiding life.


(Thoughts on sleep, anyone? Comment below!)

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

www.youtube.com/user/carlaulbrich - funny songs

www.linkedin.com/in/carlaulbrich

www.twitter.com/singingpatient

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get Carla's book! http://tinyurl.com/348hroc

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).

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...

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

Winning the hair battle with lupus

One of the toughest parts for us gals with health problems is how disease and the drugs prescribed to us affect our looks. Last year in the hospital, I mentioned to the doctor how I hate the way the prednisone makes my skin and hair all dry and sickly. He started in on the typical lecture about saving my kidneys (heard it before) and I cut him off and said "I know I HAVE to take it. But I don't have to LIKE it!"

He was put off by my frankness and thought I was being obstinate (his words), but since I was trapped on the hall (they don't allow you to wander the hospital) and full of drugs that make me not just unattractive but extremely anxious, to the point of near psychosis, and they don't have any available counselors or psychologists in the hospital... well, how surprised can he really be that once in a while someone blurts out the truth about how they feel?

Alright, so prednisone. Can't live with it (or another human being if you're on 40 mg or more), can't live without it (if you have an autoimmune disease or an organ transplant). At least it's generic and therefore cheap. But short-term it has some horrible side effects: weight gain, mood swings, nasty skin, hair loss, moon face, hump back; and long term, some even worse ones: osteoporosis, cataracts, high blood pressure, diabetes. Swap in one disease, get 4 more, and look and feel like crap in the process. All for only $4 (generic) a month at WalMart! What a deal!

I've been on this stuff 3 times now, for about a year each time. I'm on it right now, so if you don't like this blog, don't tell me about it, because I can't be responsible for my reply. Hey- if someone can get acquitted on the twinkie defense or PMS, why not the prednisone defense? It's much more valid than twinkies. For one thing, I doubt the twinkies were forced on anyone as part of a "take this or die " prescription (more like a “do this often enough and you will die”warning). Think about that.

So anyway, I don't know which causes me to lose more hair- being ill or taking prednisone. All I know is I gotta frequently pull out a blob of hair the size of a small rodent from my shower drain cover. My hair looks frizzy and damaged (probably because it is), and as someone who had long luscious blond hair most of her life, this is hard on my self-image.

So here are a few things I've done to improve my hair situation during my stints of illness/ prednisone hair melee:

1) Leave-in hair conditioner. I get this pantene stuff you can just spray in your wet hair before putting a comb through it. It helps the comb run smoothly through my hair without getting snagged, which reduces a lot of damage. You can also buy Paul Mitchell "detangler" which you use in the shower. Works as well.

2) Air or towel-dry hair before blow-drying, to cut down on blow-dry damage.

3) Do not wash every day.

4) Deep-conditioning like hot-oil or 3-minute deep conditioners. they say do it only once a week but I do it twice a week because my hair is so damaged.

5) Cut off the dead ends. Dead, dry split ends do not make your hair look longer, just more dry and unhealthy.

6) Use control paste (a dab smaller than a dime) to make the ends less frizzy. Rub it between your palms, then work it into your hair, starting from the ends. If you get too much of it near the roots, it makes your hair look greasy and unwashed.

7) Use "shine" or other hair gloss. Again, a dab'll do ya, work it in from the ends. This gives your hair back the "shine" it loses when you're fulla drugs and not metabolizing nutrients normally.

8) Use curlers (NOT hot curlers, but the kind you just put in when you hair is damp and leave in 'til it's dry) for special occasions to make your hair look fuller.

9) Use natural products as much as you can. I use healthy shampoo and conditioner that I get at the health food store or through mail order that has no perfumes or other chemical crap, and instead has tea tree oil/ aloe/ other things that are good for your skin

10) I put a water purifier (this is even better than just a filter- a purifier removes more stuff than just chlorine and lead) for my shower. My hair is softer, and is not being exposed to chlorine and other chemicals every time I shower. it took me 30 seconds to install.

11) Get a GOOD swim cap (like a speedo racing cap) if you swim in a chlorinated pool. Swimming is good for you. Chlorine is not. Anyone remember green hair from childhood summers in the pool?

12) Get a wig. if you're in a stage where you've lost so much hair that you can see your scalp, or you have curly hair growing in under your straight hair and it's making the hair stick straight up (been there, done that!), get yourself a wig. Unfortunately, as of now, "Locks of Love" (the free wigs of donated human hair) are only for cancer patients. But some health care plans may cover at least part of the cost of a wig if your doctor prescribes it as a "necessary cranial prosthesis" (I am not making this up). I was not in such a position (though I did have prescription compression panty hose). So I went shopping with my most princess-y adult friend and got myself a nice discount synthetic wig for $40. I still have it. I was nervous that everyone would know it was a wig. The first day I wore it out, the clerk in the store commented on my great haircut!

13) Then, of course, there are hats and hairpieces. One of my friends who has thin hair - not ill, just born with thin, lifeless hair- had an especially cute 'do one day. I complimented her on it and she told me it was a hairpiece she bought- at the dollar store! For a dollar! I've also seen long and short ponytails at the drugstore for quite reasonable prices. This for special occasions, especially if the hairpiece is heavy and pulls on your natural hair.

14) Color it. Sometimes certain drugs keep your hair from absorbing the dye. And some folks will tell you shouldn't be exposing yourself to more chemicals while you're sick (what do you think all those drugs are?). Maybe they're right. But, looking in the mirror and hating my hair every day isn't good for me either. The way I feel emotionally affects the way I feel physically. And not wanting to leave the house because I feel so unattractive is also bad for my mental health. So for a $10 bottle of highlighter and an hour or so of my time, I go sit outside or in the garage so I don't stink up the house, and change the way I look. It makes me feel more in control of my looks, and I think it came out pretty good this time!

15) Fix it from the inside: take flax seed/ flax seed oil. it makes your hair grow faster and gives it shine. And, it helps keep your regular! Wahoo! A quality mutlivitamin is also a good idea.

16) do NOT get hair extensions or weaves, unless you have permanent hair loss. in the end, getting extensions does a lot of damage to your real hair and eventually you have to cut it even shorter. for those of us with hair loss due to Systemic lupus and/ or prednisone use, the hair *will* grow back. Not necessarily the case if you have the cutaneous (skin) form of lupus.

One thing I regret is not having the brass to tell my family I did not want to have my picture taken the Christmas I was wearing a wig. we only get them done every 10 or so random years. Why did it have to be the year I was sick? Why immortalize that? I say this for my own ears/ eyes as much as for yours: it is your right to say "I'd rather not have my picture taken today. Can we do it on a day when I feel better so it will be a good memory?"

Many good hair days to you all. If you have ideas, please leave a comment!
Carla
www.thesingingpatient.com

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 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