Lupus, Humor, and Wellness

Leaky gut

2012-01-24T16:25:00.001-05:00

One of the things that bothered me the most about being diagnosed with lupus (and there were many) was the total lack of answers to the question "why?" Why was my body attacking itself?

Mainstream medicine usually blames genetics, although there really hasn't been much in the way of proof that this disease is genetic. In fact, few diseases are purely genetic in origin. Besides, that whole "it's genetic" thing never rang true to me. I knew in my gut there was more to the picture. And speaking of gut, today's topic is. just that: leaky gut.

20 years after my diagnosis, the mindset is finally starting to shift because no one has been able to definitively prove a genetic cause. Now doctors are saying that autoimmune diseases are "multi-causal" (caused by several or many precipitating factors). Oh, good. Now we know why I got sick... lots of reasons. Glad we cleared that up.

No wonder I went elsewhere to find better answers. As I've spoken to and worked with alternative medicine practitioners over the last 20 years, one theory that has come up repeatedly is Leaky Gut Syndrome. Holes in the gut, or a permeable gut, allow partially undigested food to leak out into your bloodstream, causing the the body to form antibodies in an... oh, look AUTOIMMUNE response. I'm listening.

What causes the gut to start leaking?

1) Use of antibiotics. Our gut is made up of healthy (and unhealthy) bacteria. When we take an antibiotic, it kills everything- the good and bad guys. The good bacteria are what help us digest our food. But now they are gone. So food is leaking out undigested. On top of the absence of good guys, we also now have an overgrowth of bad guys- candida (yeast), which is small amounts is normal. When allowed to overgrow because there are no good bacteria to maintain balance, candida causes a host of problems, including many symptoms that sound a lot like lupus.

2) stress

3) nicotine

4)other drugs: chemo, NSAIDs (advil, etc.), birth control, antacids, steroids (yes- if you didn't come into lupus with a leaky gut, you'll have one by the time they are done treating you!)

5) alcohol, excess sugar, soda, caffeine, processed foods

6) Various parasites, bacteria, mold and mycotoxins

7) nutritional deficiencies

8) food allergies

9) diseases such as Crohn's where the immune system is attacking the gut.

10) Overconsumption of grains. If you look at cows that eat grains instead of grass, they live much shorter, much more unhealthy miserable lives (see the movie "King Corn"). If you want to get a cow fat really fast, instead of letting her graze for grass, lock her in a stall and feed her corn. Sound pretty much like a day in the life of most Americans- sitting at a desk hunched over a computer, eating something probably made from corn or wheat. Those cows not only have a higher percentage of body fat, but are also very unhealthy and live much shorter lives than their ancestors. (Again, sound familiar?). Look, I love a big fat yeast roll as much as the next guy- I truly do. cake, cookies, donuts, pasta, pizza, yes. Love them all. But even gluten free, they are still grains, and eating too many grains and not enough plants is going to literally tear you up inside. And I mean "literally" not in the way most people use that word, like "really," but I mean literally as in "the literal sense of the word"- actual tears in your intestines. Hard to believe a soft, chewy pretzel could tear anything, but it can and does.

What do you think- Does it ring true to you?

This whole "leaky gut" theory sounded like a lot of hokum the first time I heard it, but the more I read and the more I do things to repair my gut, the more I believe it... in my gut...

*** If you or someone you know would like to live healthier, happier, freer life, e mail me for a free one-hour consultation - I am a holistic health coach! Talk to someone who has been there and is living well now. You've got nothing to lose, and everything to gain! Start living your best life. ***

Carla Ulbrich, The Singing Patient and Health Coach

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

www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition!

www.thesingingpatient.com tour dates, videos, CDs, books

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

The Many virtues of Junk Food

2012-01-10T20:23:00.002-05:00

Junk food:

tasty
addictive
cheap
convenient
lasts forever on a shelf

Healthy food:

blah-tasting
have to force myself to eat it
costs more
requires effort to prepare
have to go out of my way to find healthy food, in stores and restaurants and at parties (usually have to bring my own healthy food to a party)
goes bad in a matter of days in the fridge (or on the counter)
worst of all, requires me to eat my own cooking. And anyone who's ever eaten my cooking (few have done so and lived to tell the tale) knows what cruel and unusual punishment this is.

I think I've made my case. Junk food is the better choice.

Oh wait. I forgot about this part:

Junk food causes:

migraines
candida overgrowth
diabetes
ADHD
obesity
high blood pressure
inflammation
etc.

health food:

sticks in your teeth. Spinach, broccoli, beans, they all stick in your teeth. Ew!

Seems pretty clear, doesn't it? Junk food wins, hands down.

On a completely unrelated note, here's the word of the day:

adjective

1. not meant to be taken seriously or literally: a facetious remark.

2. amusing; humorous.

3. lacking serious intent; concerned with something nonessential, amusing, or frivolous: a facetious person.

Carla Ulbrich, The Singing Patient and Health Coach

www.thesingingpatient.com tour dates, videos, CDs, books

www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition!

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

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

Gum, part 2: chew on this!

2012-01-03T16:37:00.003-05:00

I posted recently about giving up chewing gum a while back because I couldn't find any that didn't have nutrasweet. And nutrasweet, for me, is poison, causing migraines and other nervous system issues. Having it in the form of gum is like having a slow IV drip of poison all day long (because I tend to chew a piece of gum for a couple hours, then swap it for a new piece and chomp on that for a while).

Mind you, even without the nutrasweet, I don't advocate chewing gum all day long, because it can cause TMJ (jaw problems), but I do like to have some gum on plane trips, and I do like to have a piece of gum when I want something sweet, but don't want to send my blood sugar all over the place with a big dessert. And I'm not really one to give up easily.

Rather than give up gum for all of time, I did some research. Once upon a time (when we were kids), no gum had nutrasweet. And since there are warnings on all foods with nutrasweet, I figured there must be some alternatives out there for those phenylketonurics for whom consuming nutrasweet could mean having a seizure. If the food industry has alternatives for those eating sugar-free, gluten-free, dairy-free and meat-free, I figured there must be something for nutrasweet-free out there, even if it's just a company who never changed from using sugar.

Here's what I found:

Spry gum, made with xylitol. I like the cinnamon, but of course that's my favorite gum flavor regardless of the sweetener.

SteviaDent. made with stevia. Haven't tried this yet.

Glee Gum, either with sugar (and no artificial ingredients!) or xylitol.

So, I have gum again. Chew responsibly don't get TMJ just because you can!

Happy New Year and happy chewing~

Carla Ulbrich, The Singing Patient

www.thesingingpatient.com tour dates, videos, CDs, books

www.bestpossibleme.com - health coaching- visit this site to get a free e book on nutrition!

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

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

How to destroy your finances in 5 easy steps

2011-12-17T00:06:00.002-05:00

Hello friends!

Are you sick and tired of having a roof over your head?

Are you bored by the humdrum existence of knowing where your next meal will come from?

Are you completely numbed out by the dull, unchallenging routine of making ends meet?

It's time to shake things up! You, too, can experience the roller-coaster thrill ride of financial insecurity- but wait, don't order yet! You can also have unimaginable pain *AND* we'll throw in - for free!!! - the judgment, blame, and ostracizing by your friends, neighbors, fellow church-goers and (former) co-workers.

Sound too good to be true? Think it's out of your reach? You can have all this and more with this easy 5-step plan. I'm not just the President of The Financial Ruin Academy; I'm an alumnus. I've done it. I know it works. And now I want to share it with you.

How to destroy your finances in 5 easy steps!

Get a college degree
Get a job
Get sick with something serious and/ or chronic
Get fired for being sick (this step is easy- no effort involved! Just drag your tired butt in to work one day and- "hey look, I don't work here anymore!")
Attempt to pay for your medical bills and rack up debt (again, easy, because you won't have income but you will have usual expenses- plus these new exorbitant medical expenses. Don't worry; even if you have insurance you'll still find this step of racking up unbearable debt will take care of itself).

* Please note- this plan to financial ruin may not be as effective in Canada, or any country having universal health care.

Step 5 can be achieved via several methods, and some are more effective than others:

a) credit card debt

b) second mortgage on home

c) pile on student loans

d) personal loans from friends

If you really want to experience the financial ruin thrill-ride, option c is best. Here's why:

Credit card loans. If one day, you need to declare bankruptcy, credit card loans can be forgiven (student loans and mortgages cannot). Credit cards are unsecured debt. They have no recourse, except to ruin your credit score. And, hey, you can get that and more with the options b and c.

Second mortgage on home. These are easy to get, and if you default- boom! no house! Pretty fast road to financial ruin. And good luck finding another house, or even an apartment to rent. Now we're getting somewhere. But wait! I think we can do even better. See, if you get kicked out of your home and it's foreclosed upon, the debt is gone with it.

Student loan. Defaults cost you massive fees, which are then tacked onto the loan. And even if you go bankrupt, these loans are not forgiven. There is no getting out of these loans! So... if you want to have drama and financial ruin in your life for all time, you too can have the security of knowing you'll always have financial insecurity! You'll never be out from under your debt. If you want to stay on this thrilling ride, this is the way to go!

Personal loans can be forgiven (but rarely forgotten) and rarely involve fees or hefty interest.

So let's review: Credit card debt, if you go bankrupt, only costs you your pride. And let's face it, if you're chronically ill, you gave that up long ago. Mortgage defaults cost you your home; personal loans cost you your friends. So really, the coup de grace is to put that medical debt onto come loan you can never get out of- student loans. Now, on top of your debilitating illness, you have a debt load you cannot possibly repay, and which will never be forgiven.

If you've enjoyed this lesson and would like to enroll in our program of Financial Ruin for Life (TM), please send $1 billion to RDR, PO Box 6284 Somerset NJ 08875. Please feel free to write the check from your student loan account.

**********
*this article as inspired by the unfortunate and true story of Kristin Rawls, a fellow graduate of The Financial Ruin Academy. read her story here (contains profanity): http://tinyurl.com/6p5gqjf

Carla Ulbrich, The Singing Patient

www.thesingingpatient.com tour dates, videos, CDs, books

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

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

Beating back the creeping crud

2011-12-13T18:50:00.003-05:00

Well, it's that time of year. The central heat is on, the sinuses are getting dried out and irritated, the cold air is upon us, and the germs are moving in and taking up residence in those poor mucus membranes.

For the first time in years, I have bronchitis. And why do I think I got sick? Well for starters, just last Wednesday I was boasting about how I never even catch a cold anymore- not in several years. Never do that.

Seriously though, what causes people to fall ill with a cold, or bronchitis, or the flu- anything contagious is the combination of these 2 factors:

1) exposure
2) susceptibility

We can only control #1 to some degree. Unlike the Japanese, people in the US don't wear a face mask when they are ill. And we certainly don't stay home. We go to work and "power through," which sadly just makes the illness last longer. And spreads it to everyone around us. And if someone in your house is ill, it's pretty hard to not be exposed to it. And do you ever think about the fact that you've never seen anyone in a train station or an airport clean things like door knobs and chair handles, which are touched by hundreds of people daily? Yeah, we're going to get exposed to germs. And that's all part of keeping the immune system awake and useful.

But susceptibility, there's something we have some power over. Our daily habits make us weaker or stronger. What we eat, how much we sleep, whether we get enough water and fiber and vitamins, how happy we are, whether we get sufficient exercise.

I actually felt the sore throat coming on last week, but I "powered through" because I had things to do, such as rehearsing for several gigs this week. Now, sadly, I'm canceling those gigs because I'm SICK... because I didn't rest when I knew I should, and I went out in the cold, damp weather multiple times with a sore throat. Stupid. But I own up to my part in this- I've been overworking for 2 years now, hardly ever taking a day off, and that, my friends, was dumb. I made myself very susceptible. In fact I'm lucky it took this long for me to end up with bronchitis.

So, I'd like to share with you what I'm doing to kick it.

Ear oil. Make your own ear oil: http://tinyurl.com/5cjbfo
Umcka. homeopathic cold cure. i started it last week but forgot to take it Saturday because I was too busy" gigging. This stuff usually works really well for me- if I feel something coming on, I start taking it, and it never becomes a full-blown anything.
echinacea
vitamin C
rest
water
raw garlic
cold-eeze (zinc)

We'll see how fast I can lick this. Meanwhile, the most important lesson I take from this experience is this: If you have to pee, and you also have to blow your nose, pee first. Trust me on that one.

{12/16/11 update: it only took me 3 days to get back on my feet- shortest bout of bronchitis I've ever had! I don't know whether to thank the Umcka or the ear oil, but it's one or both of these, because the other things in my list have always been there before, and those bouts of bronchitis always lasted 10-14 days. I'm back! If I had to get "normal people" sick (as in "just" bronchitis), at least it didn't last- and it didn't make my lungs close up like it did 8 years ago. Onward! We now return you to our regular postings about gum, gluten, and other random topics.}

Carla Ulbrich, The Singing Patient

www.thesingingpatient.com

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

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

Gum

2011-12-02T20:25:00.001-05:00

My gum-chewing days are essentially over. And while that will probably save me from getting TMJ, I do miss having something to chomp on in place of dessert, or while I'm concentrating on writing, literally chewing on an idea. And especially on an airplane, popping my ears.

But I chew gum no more, because I can't find gum that does not contain nutrasweet.

What's wrong with nutrasweet. Let me get the list. Literally.

According to http://www.ethicalinvesting.com/monsanto/aspartame.shtml ,
some of the symptoms of aspartame poisoning include:

Headaches/Migraines, Dizziness, Seizures, Nausea, Numbness, Muscle spasms, Weight gain, Rashes, Depression, Fatigue, Irritability, Tachycardia, Insomnia, Vision Problems, Hearing Loss, Heart palpitations, Breathing difficulties, Anxiety attacks, Slurred Speech, Loss of taste, Tinnitus, Vertigo, Memory loss, Joint Pain.

Furthermore, it is implicated in worsening or even triggering these conditions:

Brain tumors, Arthritis, Multiple sclerosis, Epilepsy, Chronic faigue syndrome, Parkinson's Disease, Alzheimer's Disease, Mental retardation, Lymphoma, Birth defects, Fibromyalgia, Diabetes, Thyroid Disorders.

Every single one of these contains nutrasweet. Well, OK, not the batteries.

Nutrasweet, which I used to parttake of daily (mostly in the form of Diet Coke, but also gum), is an excitotoxin, and anyone with autoimmune issues should avoid all excitotoxins. In fact, everyone should avoid them, but those of us with a diagnosis of something serious will be especially better off if we keep them out of our diet.

On the day we finally see a "wanted" poster in the post office for aspartame, underneath its photo will be these known aliases: Nutrasweet, Amino Sweet, Equal, Spoonful, and Sweet One. Like a wanted murderer, perhaps they are changing the name again to avoid the bad press that nutrasweet is getting. This "food" should never have been allowed into the food supply, but if you've got deep pockets and know the right people, I do believe you can get the FDA to approve cyanide as safe for infant formula.

Don't just take my word for it. Read some of the many articles on wellsphere.com about aspartame poisoning:
http://www.wellsphere.com/wellpage/aspartame-banned

Or read this webpage:
http://sweetpoison.com/

Or this one:
http://www.naturalnews.com/034320_aspartame_sweetener_side_effects.html

Don't count on the government to protect you from unsafe foods. Take on that responsibility yourself. And if you're looking for hidden nutrasweet in food, just know this- if the label says "attention phenylketonurics: contains phenylalanine" then it contains nutrasweet. And for me, that means it's not going in my mouth.

Nutrasweet for me means migraines and/ or diarrhea. Yeah, I just typed that publicly. I get diarrhea. TMI! Well, I don't, now. Because I don't poison myself anymore with soda and gum containing nutrasweet. I accidentally ate some nutrasweet recently when I bought some *regular* lifesavers (*not* sugarfree). I ate 3, then- 100-yard dash to the bathroom! WTH? The only unusual thing I had eaten that day was lifesavers. So, I went and read the package, and even though they were *not* sugar-free, they contained nutrasweet.

Why would they do that? Because nutrasweet is 16 times sweeter than sugar, and cheaper to manufacture. So, they can use less sugar and increase their profits.

Apparently, nutrasweet (aspartame) is also an effective preservative, which I assume is why they use it that stuff they give people before a colonoscopy, and in prescriptions like cellcept. (Which may be why I couldn't tolerate high doses of cellcept. Boy was I mad when I read the pamphlet and saw nutrasweet in the ingredient list- I gave up Diet Coke, my favorite drink, and I also gave up chewing gum, because of the nutrasweet, and now my prescriptions were sneaking it into my system - and I didn't even get the enjoyment of a gut-rotting fizzy treat?).

So, if you are avoiding nutrasweet, assume nothing and read all labels. Simply look for the warning (always in bold letters) "attention phenylketonurics: contains phenylalanine." If you're looking for a gum without nutrasweet, I'll save you some time: there isn't any. It ALL has nutrasweet in it, unless you go find some natural gum at the health food store.

Looks innocent, right? Big Red! I chewed that as a kid, nothing but sugar and whatever gum is made of (rubber?).

Not health food by any stretch, but also not something that was going to cause migraines and diarrhea. (Oh, that's that word again. How many times can I put that disgusting thought into one article? Hopefully as many as it takes to make nutrasweet seem like the non-food that it is).
And now, chew on this (actually, don't chew on this):

Always read the label!

Read the labels and if you're having health problems, consider eliminating this "food" from your diet.

Well wishes, my friends.

Carla Ubrich, The Singing Patient and Health Coach

www.thesingingpatient.com

www.bestpossibleme.com - health coaching- visit this site to get a free e book on nutrition!

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

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

Inflammation

2011-11-29T01:34:00.004-05:00

Inflammation. It is the hallmark of many diseases (perhaps *all* diseases), including lupus.

We have an epidemic of inflammation in this country, and it's killing us. There is a direct link between inflammation and obesity, inflammation and cancer, inflammation and diabetes, inflammation and lupus, and certainly inflammation and pain.

From what I can tell, anything with the suffix "itis" is inflammation.
bronchitis= inflammation of the bronchial tubes
nephritis= inflammation of the kidneys
pancreatitis= inflammation of the pancreas.
Etc., etc. etc.

So what causes inflammation and how can we get rid of it?

Inflammation is like a fire. There is always heat associated with inflammation. It can range from simmering smoldering embers to a full-on 4-alarm blaze. When I've experienced joint swelling and pain from lupus, those joints are always hot, like they are literally burning. The fire, or irritation, is "the bringing of a bodily part or organ to an abnormally excited or sensitive condition." And what would cause this- what would ignite such an internal fire in a human body? The human body is inflamed by stress, toxins, allergens, and food additives.

To reduce inflammation, we can use 2 approaches:

stop feeding the fire. Remove the offending irritants by reducing stress, identifying and removing allergens and toxins, and avoiding processed foods.
douse the fire with anti-inflammatory substances. This includes either:

drugs (anti-inflammatory drugs, which include NSAIDs - nonsteroidal inflammatory drugs such as Advil, Aleve, aspirin, etc. as well as more heavy duty anti-inflammatories, such as corticosteroids and chemotherapy).
more natural means. and we have 2 choices here:

eat an anti-inflammatory diet. This would involve no sugar, no dairy, little meat, few grains, lots of vegetables.
take supplements. Specifically fish oil. More specifically, high-grade pharmaceutical, clean fish oil, such as Barlean's, every single day.

Approach #1 (stop feeding the fire) is a great first step for anyone and everyone, and for some people might be enough- especially if they learn of food allergies and sensitivities and take those foods out of their diet. For example, if you learn you have Celiac disease and remove all gluten (and for some people, dairy as well), you will have no more Celiac problems. Do what you can to remove toxins from your environment and allergens and "fake foods" from your diet. For me, removing aspartame and MSG meant no more migraines, and removing gluten meant no more joint pain, and much better digestion.

Other folks, especially those with chronic inflammation, will need to do more. So which of these options is best?

The problem with taking anti-inflammatory drugs long-term is that these drugs, though effective at relieving pain, are hazardous to your health. An anti-inflammatory diet is a wonderful choice, though it can be hard to implement at times (especially when eating out). In general, I believe everyone should try to move their diet towards being less inflammatory. Less sugar, less meat, no artificial sweeteners, lots more veggies.

One thing I believe we can all do every day is to take high-grade fish oil daily. Douse the inflammation. Put out the fire! My current favorite brand is Barlean's. It was recommended to me by an MD. He believes anyone with lupus should take fish oil daily. So do I.

If you or someone you know would like to talk to me about reaching your health goals, send me an email. I am a holistic health coach. E mail me for a free one-hour health consultation, whether it's about implementing an anti-inflammatory diet, losing a few pounds, or finding life balance- anyone who wants to achieve their health goals, big or small- e mail me at carla@thesingingpatient.com .

'til next time, be well, my little fishies!

Carla

Carla Ubrich, The Singing Patient and Health Coach

www.thesingingpatient.com

www.bestpossibleme.com - health coaching- visit this site to get a free e book on nutrition!

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

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

a breath of not so fresh air

2011-11-17T20:57:00.002-05:00

Hello faithful readers!

Today's topic: fresh air.
I just returned from a music conference where a friend of mine (Angela) is fighting an uphill battle to make people aware of MCS (Multiple chemical sensitivity). She has been crippled by it. She lost her job because of mold exposure (at the job!) and, if I remember correctly, she traces her MCS onset to the mold exposure.

I understand it to a small degree, because I have sensitivities to smoke and perfumes, and can end up either sneezing or getting a headache from a short exposure. Her consequences are far more serious. And the reason for her attempts at increasing awareness is not to garner sympathy, but to get people to reduce the amount of chemicals they spray on themselves before going into a confined crowded space to interact with others.

"The right to swing my fist ends where the other man's nose begins." - attributed to Oliver Wendell Holmes, Jr. Perhaps, too, your right to perfume the air with toxic chemicals ends where my nose begins.

Every year Angela brings organic healthy liquid soap and lotion and stocks the lobby bathrooms of the hotel with them, to reduce the chemical fragrance load at the conference. Still, in order to participate, she has to wear a gas mask most of the time at the conference (partly because the hotel is a little moldy). Still, small changes like changing the soap and lotion mean that (unlike previous years) she can now occasionally remove the mask and have a conversation.

Much better than the typical nasty pink soap, which i must say, suspiciously resembles (in both color and fragrance) the pink urinal cakes. Not that I use the men's room (except in desperate gas station situations)- but I once had a job cleaning toilets. Yes, the glamorous life of show biz, I know. Well, hey, I could only go up from there.

Where were we? Oh, yes, fragrance. I'm baffled that so many people "freshen" the air in their homes with chemicals- plugins, stickups, sprays, perfumes- I can just feel my lungs closing up. When we were discussing the public overload of cologne and perfume before the conference (often just walking down the street I have to cover my face to avoid inhaling a gallon of cologne-saturated air)- knowing the amount of neurotransmitter interruption caused by these chemicals, it starts to make me miss good old fashioned B.O. Maybe that's what my dog likes about sniffing another dog's butt- at least it's organic.

OK, maybe we don't want stinky homes- or armpits- but there are plenty of natural non-toxic effective ways to de-stink.

For the pits: Burt's bees or tom's deodorant. As a major bonus, they also do not contain aluminum, which is linked to Alzheimer's. And anti-perspirant may be linked to breast cancer. (Think about it: our bodies want to sweat and we won't allow it? This can't end well.) Here's my favorite:

For the home: house plants clean the air. I've had peace lilies in the living room for years, and I also just got a snake plant, which is commonly used in the bedroom because it gives off lots of oxygen at night.

For the home: Moso bags are charcoal, which absorb toxins. You set them in the sun outdoors for an hour once a month so they can offgas (release) all the toxins. They last for 2 years. 500g size is for one normal sized room.

And for the car (Dear God, if I have to ride in another taxi that smells like a pink-pine-tree-cigarette...): Mosu bags also come in small sizes for the car!

Happy breathing~

Carla Ubrich, The Singing Patient and Health Coach

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

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

Lupus and Diet

2011-11-09T20:16:00.002-05:00

Today I spoke/ sang for a support group at the SLE Foundation in NY City. What a great group of people.
Lots of great energy and ideas bouncing around, and I was heartened and inspired by the open-mindedness, strength, willingness and ease of communication. Right near Penn Station, too- really easy to get to!

I've mentioned this before, but I'll mention it again. Support groups for lupus have come a long, long way in 20 years. When I first became ill with lupus, support groups had 2 allowed topics: prednisone and lawyers. Any talk of alternative medicine or emotional stuff was shut down. So happy to say that is no longer the case. I watched today as a patient brought up her concerns about cellcept and placquenil to the rest of us, and we were all able to inform her of our experiences, helping to ease some of her anxiety and sort things out so she could make a decision. Beautiful.

From their wall (if this were a bumper sticker, it would be like "baby on board!"):

Typically when I talk, I tell my story and how humor, creativity, alternative medicine and diet helped me get my health back. When speaking to this group today, the focus was really about how I got to be in a drug-free remission, with all my hair and enough energy to do what I want to do in life. And we talked a LOT about diet. People interjected with comments and questions, which was great- I love an interactive dialogue, versus a monologue (90% of my gigs are a "performance" and all the audience does is clap and occasionally sing along when invited to do so). I learn things too. (For example, I did not know that 1/3 of lupus patients have RA and 1/3 of RA patients have lupus. Explains why the "purple jewelry" charm bracelet I have has both an RA blue ribbon and a purple lupus ribbon).

I was surprised how very interested- not just receptive, but really interested- these patients were in hearing about diet. And that is what we talked about most.

There are 2 diets I've seen out there which both claim to heal/ help/ even cure lupus patients:
Paleo Diet ("caveman" diet that is meat and veggies- and lots of raw food)
Lowfat Raw Vegan (no meat! but all raw food, both fruits and veggies).

Seems confusing- all meat, no meat- what's better?
Perhaps a better question is: what do these 2 effective anti-lupus diets have in common? And from what I can tell, it's a lack of dairy and a lack of grains, particularly gluten. This diet is known as the GFCF diet (gluten free, casein free- a.k.a. dairy free) and has been used effectively with numerous autoimmune diseases and autism.

My hope and dream in going to speak to lupus (and MS and myositis and RA) patients is to one day hear back from some of them that they tried a GFCF diet, and it helped to reduce or eliminate symptoms, and helped them to reduce or eliminate their need for immune suppressants. And for those who have trouble learnign this diet on their own, I offer reduced rates for patients as a health coach, where I also support and educate people so they can relearn to eat in this somewhat counter-cultural way. It isn't easy at first, but it gets easier after you adjust. And even when it's at its hardest, it's easier than being on prednisone. I have my life back. My desire is to give this gift to others suffering from lupus.

If you or someone you know would like to have a free one-hour health consultation with me, whether it's about gluten-free or not- anyone who wants to achieve their health goals, big or small- please e mail me at healthcoach@bestpossibleme.com .

On another post I'll talk again (I have before) about the other 2 bugaboos I eliminated:
MSG and nutrasweet. Happy trails 'til next posting~

Carla Ubrich, The Singing Patient

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

get the book! http://tinyurl.com/348hroc

Most Women with Lupus Can Have Successful Pregnancy Outcomes

2011-11-05T22:33:00.002-04:00

Most Women with Lupus Can Have Successful Pregnancy Outcomes

Results from Multicenter NIH PROMISSE Study Find Pregnancy Safe for 80 Percent of Women with Lupus

Chicago, November 5, 2011—Promising research led by investigators at Hospital for Special Surgery may offer hope for women with lupus who once thought that pregnancy was too risky.

Results from the multicenter National Institutes of Health (NIH) funded PROMISSE initiative, being presented Monday, Nov. 7 and then during a press conference on Tuesday, Nov. 8, during the American College of Rheumatology’s 2011 Annual Scientific Meeting in Chicago, show that most women with stable lupus can have successful pregnancies.

“There was a misconception, based on outdated experience, that women with lupus should not try to have children,” said Jane Salmon, M.D., the study’s senior author and Collette Kean Research Chair at Hospital for Special Surgery in New York City. “Now that our treatments are more effective and we have a better understanding of the disease, we can identify a window when pregnancy is safe and outcomes are good for mother and fetus.”

Historically, women with systemic lupus erythematosus (also know as SLE or lupus) have been advised not to become pregnant because of risks to their own and their fetus’ health. SLE is a chronic inflammatory disease, in which the body’s own immune system attacks tissues of the body and can cause complications during pregnancy.

Drs. Salmon, together with Jill Buyon from New York University Medical Center, and their collaborators evaluated 333 pregnant women with lupus from the PROMISSE Study (Predictors of pRegnancy Outcome: BioMarkers In antiphospholipid antibody Syndrome and Systemic Lupus Erythematosus), which seeks to identify biomarkers that predict poor pregnancy outcomes. The research team found that 80 percent of lupus patients had a favorable pregnancy outcome.

Patients with lupus may be free of symptoms for long periods of time and then experience a disease “flare,” when symptoms such as rash, joint pain, chest pain, swollen legs, bruising and/or fatigue suddenly appear.

“Most women with stable lupus, defined as limited disease activity and no flares during the time of conception and the first trimester, had successful pregnancies,” explained Dr. Salmon, who is also the principal investigator of the PROMISSE Study. “We learn from these results that timing is a most important element for successful pregnancy in women with lupus and that avoiding pregnancy during periods of increased disease activity is essential.”

In the study, two categories of pregnancy complications were evaluated: the health of the mother and of the fetus. The research team studied development of mild, moderate, or severe increases of lupus activity, or flares, in expectant mothers. For the fetus, the study examined the worst outcome – death – or situations in which the well-being of the child would require extended hospitalization in a critical care unit.

Of the 333 women with lupus studied, 63 had poor outcomes. Ten percent of mothers experienced preeclampsia, a serious complication characterized by the onset of high blood pressure and appearance of protein in the urine. Ten percent experienced mild or moderate flares at 20 weeks and eight percent experienced flares at 32 weeks. Nineteen women experienced death of the fetus and 30 women delivered before 36 weeks or had newborns of small gestational size – smaller in size than normal for the baby's sex and gestational age, commonly defined as a weight below the 10th percentile for gestational age.

None of the women in the study was pregnant with more than one fetus, took more than 20 mg/day of prednisone, or had abnormally high excretion of protein or impaired kidney function. The women who experienced complications had more active lupus at 20 and 32 weeks and higher levels of antiphospholipid antibodies.

[My question here is- did the pregnancy trigger the flare for these women? If the active lupus doesn't kick in until week 20, the women is already pregnant at the time the flare starts, so her lupus being "stable" is not a guarantee that her pregnancy will end well. How can we know whether a woman is in that 80% or the 20%? Since I have met women with lupus whose pregnancies ended in miscarriages and one whose pregnancy triggered a flare that is still active, 10 years after the fact, I would still temper the hope for a good outcome - very good news for women with lupus who deeply desire to bear their own child- with the caution of a possible very bad outcome. Know the risks going in- for 20% of these patients, the pregnancy had a bad outcome. How is that statistic in comparison with healthy women? How many healthy women have pregnancies resulting in their own poor health and/ or miscarriages? Probably not 20%. Of course, 80% of pregnant lupus patients having a desirable outcome is far better than we believed it would be.]

The PROMISSE study was funded by the National Institute of Arthritis, Musculoskeletal and Skin Diseases of the National Institutes of Health in 2003 to identify biomarkers that would predict poor pregnancy outcomes in lupus patients. To date, the PROMISSE investigative team has enrolled 647 volunteers who are monitored with monthly checkups and research laboratory studies looking at genes and circulating proteins that may predict the course of pregnancy. PROMISSE will continue through 2013 with $12.3 million in support over ten years from NIAMS and the office of Research in Women’s Health. Dr. Salmon and co-investigators from 11 academic centers will continue to examine a broad range of genes and molecular pathways that can affect pregnancy in women with lupus, and, it is anticipated that their findings will have applications for the prevention of miscarriage and preeclampsia in healthy women.

The PROMISSE Study is coordinated by Dr. Salmon; Other investigators include Michael Lockshin, M.D., and Lisa Sammaritano, M.D., at Hospital for Special Surgery; Jill Buyon, M.D., at New York University School of Medicine; Ware Branch, M.D., at University of Utah Health Sciences Center; Carl Laskin, M.D., at Mt. Sinai Hospital in Toronto, Canada; Joan Merrill, M.D., at the Oklahoma Medical Research Foundation; Michelle Petri, M.D., MPH, at Johns Hopkins University School of Medicine; Mimi Kim, D.Sc., at Albert Einstein College of Medicine; and Mary Stephenson, M.D., at the University of Chicago.

About Hospital for Special Surgery
Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology, and No. 16 in geriatrics by U.S.News & World Report (2011-12), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at www.hss.edu.

Lupus Research Findings

2011-11-05T20:33:00.006-04:00

Below are highlights of patient-focused research from Hospital for Special Surgery that will be presented at the Annual Scientific Meeting of the American College of Rheumatology (ACR) in Chicago, from November 5-9. This information was forwarded to me by the Hospital for Special Surgery. I have pasted it verbatim, minus the room locations for the conference. My comments on the research findings are inserted below each study.

Hospital for Special Surgery Physician-Scientists Share Advances in Rheumatology Research

Chicago, November 5, 2011—Hospital for Special Surgery physician-scientists who focus on arthritis, lupus, vasculitis and related conditions are traveling from New York City to Chicago this week to share their recent findings at the 75th Annual Scientific Meeting of the American College of Rheumatology (ACR).

Highlights of presentations by Hospital for Special Surgery physician-scientists include:

Most Women with Lupus Can Have Successful Pregnancy Outcomes

Investigators of the NIH-funded PROMISSE Study (Predictors of pRegnancy Outcome: BioMarkers In antiphospholipid antibody Syndrome and Systemic Lupus Erythematosus) evaluated 333 pregnant women with lupus and found that 80 percent of patients had a favorable pregnancy outcome. The findings provide reassurance for patients with stable lupus, who are contemplating pregnancy, and suggest factors that merit caution for the minority of high-risk lupus patients. “Patients enrolled in this study had inactive lupus at the time of conception and during their first trimester, which we believe explains why a large majority of these women had successful and uncomplicated pregnancies,” explained Jane Salmon, M.D. “Now that our treatments are more effective and we have a better understanding of the disease, we can identify a window when pregnancy is safe and outcomes are good for mother and fetus. Our findings should change the way patients and physicians view pregnancy in women with lupus.”

[Would like to know more about the 20% who didn't do so well. It's nice to encourage people but also wise to caution them. What women should *not* to try get pregnant? I met a lupus patient who had survived 9 miscarriages. My next blog post will give further detail on their findings.]

Life Challenges Prevent Those with Lupus from Keeping Doctors’ Appointments

Healthcare providers at the Mary Kirkland Center for Lupus Care observed that many patients failed to keep doctors’ appointments, which can lead to less-favorable outcomes in these lupus patients’ care. Researchers at the Center examined this patient population, largely homogenous with low socioeconomic status, and found that most of these individuals did not attend their appointments because of either tardy or unreliable transportation, such as ambulettes, or because of insufficient childcare. “Healthcare appointment compliance is critical for a lupus patient’s care, because timely communication with their physician keeps both parties up-to-date on prescription and care instructions,” explained senior author. Doruk Erkan, M.D. “By not following up with scheduled appointments, patients may stay on a course of medication that should be changed, which could quickly become dangerous.”

[ OK, clearly the current system of patients schlepping all over the place and killing a half day to get 8 minutes with a doctor isn't working, especially for people of lesser means. Heck, even those of us of medium means, once we get there, have a hard time sitting around in crowded, germy, cold, fluorescent-lit waiting rooms. We obviously can't go back to the old days of house calls- doctors are too used to having everyone come to them- but perhaps we can move forward and embrace technology, allowing patients to phone, e mail, text, or skype in their appointments. It's not as good as in person, but it's better than people not having an appointment at all. And let me just point out, at least for me, the appointment is *two* appointments because I have to go to the lab a week before the appointment to get my blood drawn. That one can't be skyped or phoned in- I have to go- but maybe a traveling lab service? Maybe at a local Walgreens? I was at one point going to a clinic who wanted me to come every single week- one for labs, once for some other test, once for my appointment- and I wasn't allowed to drive because I wasa anemic. I had to get someone to drive me every time, and it was an hour from my house. I said "Can't I just get my blood drawn near my house?" They said, and I quote "Well this is more convenient for us." Seriously??? We have to make things more patient-friendly. Period. That is what I get from this research. ]

Rheumatoid Arthritis Patients Have Low Expectations After Knee Replacement Surgery

Compared with osteoarthritis (OA) patients, individuals with rheumatoid arthritis (RA) who undergo total knee replacement surgery have lower expectations about their postsurgical outcomes. These lower expectations could cause some patients to slack on their postsurgical rehabilitation, leading to worse outcomes. The researchers compared 62 RA patients with 124 OA patients to make their conclusions. “If rheumatoid arthritis patients are healthy enough to have surgery, they should really expect good outcomes. It would be a real shame if these patients could have significantly improved function, but don’t because they expect to be able to do less in their postsurgery therapy,” said Lisa Mandl, M.D., co-author of the study and rheumatologist at Hospital for Special Surgery. “What we can do as doctors is ensure that we educate our patients properly,” said Susan Goodman, M.D., HSS rheumatologist who led the study.

[I don't have RA but I do agree with the belief and the finding here that is you expect a bad outcome, you will help create a bad outcome by both your belief and your actions which line up with that expectation- a.k.a "self-fulfilling prophecy."]

One-Year Results of Cardiovascular Intervention Program in Lupus and Antiphospholipid Antibody

Results from the first year of a three-year cardiovascular disease prevention counseling program in lupus patients show that the program’s patients are motivated to better control their cardiovascular health by maintaining healthy diet and exercise regimes. However, while there was a significant improvement in diet and exercise habits, the findings do not show a significant improvement in clinical parameters such as high blood pressure, body-mass index, or cholesterol profile at one-year follow-up. “We’re encouraged that these patients are working hard to improve their cardiovascular health, and it is possible that they will have improved results after the study has reached the end of its third year,” said senior author Doruk Erkan, M.D. “These results demonstrate just how difficult it is for lupus patients to improve their cardiovascular disease risk factors that would be relatively easier to achieve in most other individuals.”

[OK, and now how about some info as to *why* this is the case? I guess in order to find this out I'd need to be at the conference this weekend. But, since I just learned about this conference, and my time machine and transporter devices are on the fritz, I'll just have to wonder. This is a very discouraging bit of news, that motivated lupus patients can change their lifestyles and yet not lose weight or improve their overall health. Why is this? Are they on drugs that cause weight gain? What diet cahnges and what exercises were they doing? More info, please. Don't leave us powerless and hopeless.]

Tweaking Withdrawal of Rheumatoid Arthritis Medications Before Surgery May Reduce Disease Flares
To minimize infections, doctors stop giving anti-TNF medications before surgery. These medications are powerful immunosuppressants and effectively control disease activity in RA patients. However, it is not known how long anti-TNFs should be held prior to surgery to ensure the best outcomes in patients. Stopping them too early may put these patients at risk for RA flares, which may complicate recovery. This study found no increased risk of infections in RA patients taking anti-TNF medications compared with those not on these medications, and a trend toward more postoperative flares in the anti-TNF patients. Different anti-TNFs were held seemingly arbitrarily, with no correlation to half-life. Rheumatologist Lisa Mandl, M.D., senior author of the study, said more evidence-based studies are needed to determine optimal timing of pre-operative use of these medications.

[Interesting. Worth studying. I don't have RA, so not much else to say.]

Stress Triggers Disease Flares in Patients with Vasculitis

Stress can contribute to disease flares in those with Wegener’s granulomatosis – a form of vasculitis that causes inflammation that destroys blood vessels. This is the first study to show that mental health is a risk factor for patients with vasculitis. “When this disease flares, people are really sick. It affects the lungs, sinuses, kidneys and nerves, and can cause fever and rashes,” said Robert Spiera, M.D., lead author of the study and director of the Vasculitis and Scleroderma Program at Hospital for Special Surgery. Dr. Spiera suggests that doctors be attentive to the psychological health of these patients along with their medical care.

[ Well, I'm glad we have a specific study to back up what we already know- stress triggers flares in ALL diseases. Science often seems to have the job of proving that common sense is... wow, true. But nowadays you can't go around spouting common sense without a scientific study to back you up, or you'll get sued. So, thanks science! Stress is BAD!]

About Hospital for Special Surgery :

Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology, and No. 16 in geriatrics by U.S.News & World Report (2011-12), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at www.hss.edu

About Carla Ulbrich:
Carla Ulbrich is The Singing Patient and author of How Can You Not Laugh at a Time Like This?, a book which has received the Lupus Foundation of America's Seal of Approval. She lives in Central New Jersey, has released 5 CDs of funny songs, and has strong opinions on the topic of lupus, as she has been living with it for 20 years. An avid user of alternative medicine and a reluctant user of mainstream medicine, there is hardly anything Carla hasn't tried to regain her health. And a lot of it worked. Carla is very active, and has fully recovered from stroke and kidney failure to resume touring and performing as a comical songwriter. Many of her songs are about her "adventures" as a patient ("Sittin' in the Waiting Room," "On the Commode Again," "Prednisone," etc.) Hear them here:
www.thesingingpatient.com

Enter to win a year's worth of Gluten Free Goodies!

2011-10-24T23:53:00.000-04:00

Hello my Gluten-free friends!

Just stumbled upon this chance for you to win a year's worth of Gluten Free Yummies from French Meadows Bakery. The info is on Christine Miserandino's "But You Don't Look Sick" website:

http://www.butyoudontlooksick.com/articles/spoon-lady-speaks/win-1-year-supply-of-french-meadows-bakery-organic-gluten-free-products/?utm_source=feedburner&utm_medium=twitter&utm_campaign=Feed%3A+bydls+%28ButYouDontLookSick.com%29

Sounds yummy, and I do feel better since going gluten-free several years ago. Remember of course, even gluten free cookies are still... cookies, so make sure you also get in your fruits, veggies, and whole grains.
Here's to health eating and feeling great!

Carla Ulbrich
The Singing Patient, author of "How Can You NOT Laugh at a Time Like This?"

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

get the book! http://tinyurl.com/348hroc

Great Resource for Lupus info and Support

2011-10-20T18:08:00.001-04:00

On October 8, I attended and performed/ spoke as The Singing Patient for the Lupus Summit in Charlotte, NC.

Room full of Lupus Thrivers and their loved ones

I had the pleasure of meeting a bunch of other fabulous lupus patients, and I was doubly impressed. First of all with the patients, and second, with this incredible chapter of the LFA.

The patients. Lupus patients are real survivors. The indignities we tolerate are too many to mention. The chronic pain, the years of being told we're imagining our problems, the disfiguring side effects of the drugs, people telling us we are sick because we have sin in our lives, or they ask weird questions like "isn't that AIDS?".. or they suggest that maybe we'll get better if we get pregnant (never mind that I wasn't married when someone suggested that, and I certainly had no energy to raise a child, AND it turns out pregnancy can actually trigger lupus or make exiting lupus worse- UGH!).

This is a chronic disease, so we're looking at a lifetime of more of these indignities. It's one thing to survive a plane crash, or any other event that happens in an instant and then is over. That is remarkable and worthy of celebration. But it is another thing entirely to survive day after day and year after year of struggle with illness.

That kind of struggle changes you profoundly. And hopefully for the better. And this, if you survive it all, can make you into a very interesting, strong person, often with a twisted wicked sense of humor. And that is what I love about my fellow lupus patients. The strength, the resolve, and the humor. We are true survivors.

These are the kind of people I met at the Lupus Summit. Women who have been abandoned by loved ones, who have survived multiple miscarriages, stroke, organ failure, and more, and who have often gone on to make their lives better because of these difficult events.

The LFA Piedmont Chapter.

with Christine John Fuller

When I first went to a support group in 1994, I was depressed by it. It was full of people who were in pain, unhappy, and had no hope. And the moderators shut down any talk of alternative medicine, or even working through emotions. All we could talk about was prednisone and disability lawyers. Thankfully, I decided to look elsewhere, because I did not want to end up in a wheelchair getting all my bones replaced after settling for prednisone as my only course of action. And I found a lot of things that helped me to get back off the prednisone and stay well.

And now, all this time later, I'm happy to say that support groups have changed a lot in 17 years. I'm particularly impressed with the open dialogue, the talk of self-care and dietary changes, and the responsibility I see patients taking for their lives. We can get our dignity back, and reclaim much of our health.

The Lupus Summit is ridiculously cheap- only $15 to attend!! and happens annually in Charlotte, NC. And if you're too far away to attend, you can watch videos of many of their presentations online for *free*. They are archived here (my talk will be archived here eventually, too):
http://vimeo.com/28278431

Kudos to Christine and Elaine for running a stellar chapter of the Lupus Foundation of America. You are making a difference, and I hope other chapters will follow your fantastic example.

with Elaine Neilson

Carla Ubrich, The Singing Patient

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

get the book! http://tinyurl.com/348hroc

Guest post: Lupus and MS

2011-10-03T18:17:00.000-04:00

Multiple Sclerosis and Lupus: The Connections

Today we have a guest blogger, Chipper Nicodemus, writing in on the topic of the commonalities between Lupus and MS.

What is Lupus

Lupus is a chronic inflammatory autoimmune disorder that affects the skin, joints kidneys and other organs. An autoimmune disorder is a condition in the body where the immune system incorrectly and mistakenly attacks and destroys the good, healthy body tissues. Lupus is one of more than 80 autoimmune disorders.

Causes and Risk Factors of Lupus

The exact cause of Lupus isn’t known, but some researchers believe that the disease occurs after an infection with an organism that looks like a mistakenly identified protein and wrongfully is then attacked. In a normal body the immune system’s white blood cells usually protect from the harmful substances, but in a person with Lupus the white blood cells are mistakenly attacked. This happens because the affected immune system cannot tell the difference between healthy and harmful cells. Women are nine times more likely to get lupus than men.

The Treatment of Lupus

The main goal of treatment of lupus is to reduce symptoms, and control the autoimmune process all while keeping the body’s ability to fight the disease. There is no cure for Lupus, but anti-malaria drugs are used to battle skin and arthritis symptoms. More severe or life threatening symptoms, such as heart or lung issues, require treatment with stronger medications in the form of various immune suppressants.

What is MS

Multiple sclerosis, like Lupus is an autoimmune disorder, affects over 300,000 Americans and is a chronic central nervous system that affects the brain and spinal cord. Each MS symptoms can last for days, weeks or sometimes even months and there are periods of reduced or even luckily no symptoms. Some of the more common symptoms are loss of balance, muscle spasms and even problems walking, but even extend to sexual problems, incontinence and speech problems.

Treatment of MS

Similar to Lupus, there is no cure for multiple sclerosis, but there are therapies that can slow the disease down. The goals of the treatment of MS is to control the symptoms and help the patient keep a good quality of life. Different types of medications are used to slow the progression of MS and can be taken for longer periods of time. There are medications that reduce muscle spasms, reduce urinary problems and sometimes antidepressants are prescribed for mood or behavior symptoms.

How Lupus and MS Relate

There are several similarities between Lupus and MS, including many key symptoms and affects. Sometimes Lupus can mimic the symptoms of Multiple Sclerosis and only a doctor can correctly diagnose one or the other. The following list are some examples of how Lupus and MS relate.

• Autoimmune disease

• Onset in early adulthood

• Women more likely affected (90% of lupus patients and approx. 85% of MS pateints are women)

• Chronic disorders

• Treatments ease symptoms rather than cure

• No cure

Do you have MS or Lupus or know any family members or loved ones that do? Please feel free to share your experiences below in the comments.

This guest blog post was written by Chipper Nicodemus, an SEO Assistant at Healthline.com. Healthline Networks has extended its health search technology services to include specialized health tools that address the patient pathway – from symptoms to treatments, to doctors, to medications.

Healthline Networks, Inc. • Connect to Better Health

www.healthline.com

Comment From Carla:

It is interesting to note that you can have both lupus and MS. There’s no rule saying you can only have one autoimmune disease, or even just one disease. I know someone who has lupus and cancer. I myself have 3 autoimmune diseases (lupus, Raynaud’s, Sjogren’s) and fibromyalgia.

What is interesting to note is the commonalities amongst autoimmune diseases and the strong trend towards their mostly affecting women, and mostly women between 20-40. For thoughts on the gender issue, see my previous post on that topic here: http://lupusandhumor.blogspot.com/2011/09/why-do-more-women-than-men-get.html

Carla Ulbrich, The Singing Patient

_____________

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

"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 the book! http://tinyurl.com/348hroc

Candida. Part One of many, I'm sure

2011-09-30T17:03:00.003-04:00

Today's topic is Candida. Not the female name. Not the Abba song. The fungus, the yeast, also known as thrush (in the mouth), a.k.a. yeast infection (in the hooha). But if you have Candida infections in the hooha or the mouth, you've probably got a systemic problem- you're swimming in yeast.
And here's the thing about systemic yeast overgrowth- the symptoms overlap a LOT with autoimmune disease.

Frequent stomach pains and digestion problems
Skin problems (skin infections, eczema, psoriasis, acne)
Foggy brain / Trouble concentrating
Constant tiredness and exhaustion
Anxiety
Mood swings
Obsessive compulsive disorder (OCD)
Anger outbursts
Irritability
Headaches
Intense cravings for sugars, sweets, and breads
Itchy skin

Knowing how hard it is to nail down a diagnosis of most autoimmune diseases, especially lupus, wouldn't it be good to find out whether we had a yeast overgrowth? Perhaps even just a yeast overgrowth, and not an autoimmune disease. Or maybe an autoimmune disease that was caused by or made worse by a candida overgrowth... Definitely worth looking into.

What causes candida overgrowth? One really big precipitating factor is use of antibiotics. The rapid rise in Candida overgrowth in the US immediately followed the beginning of widespread use of antibiotics. There are good, friendly bacteria in our intestines that break down our food and the fiber in it. They also keep the candida in check. But antibiotics are like atom bombs- they kill everything, not just the one bacteria the doctor prescribed it for. The good bacteria become "collateral damage" and now we leave the door wide open for the candida to move in and take over, wreaking havoc.

Unfortunately, another thing that causes candida overgrowth is use of steroids such as prednisone, the very drug we are using to treat the symptoms that were possibly caused by candida overgrowth.

Twice I have gone on a candida diet - anti-candida, not pro candida, though most of my life I've been on a pro-candida diet and didn't know it. Lots of sugar and carbs. Both times were after a 9-month course of prednisone. Once I used the diet plus herbs, and once I used the diet plus nystatin (a prescription which is hard on the liver, but effective).

I got to thinking "It's time again," as I have not done a candida diet/ treatment program since my 3rd round of long-term prednisone, and I'm pretty sure I have a Candida problem again. I was waffling on pursuing the idea again when I received a letter from someone who heard me on the radio back in January in Florida and had totally cleared up her lupus by doing the candida elimination. She sent me the info for the National Candida Center, and I'm working with them now. Thank you, universe, for that confirmation, and friend, for taking the time to write me.

I'm doing some tests over the weekend to be certain, and I'll tell you all about those in the next post.

Are you curious as to whether you might have a candida overgrowth?

Do these self-tests here:
http://www.nationalcandidacenter.com/candida-self-exams/

To your good health and mine!
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs

"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 the book here: http://tinyurl.com/348hroc

Lupus Speaker/ Blogger/ Author Sara Gorman in NYC this Thurs. 9/29

2011-09-27T16:13:00.000-04:00

Hey friends!

Coming up very soon is a great opportunity to hear from Sara Gorman, author of Despite Lupus.
She is presenting a workshop in New York City on Thurs. Sept 29 at noon on living well ... yes, despite lupus!

Please note: although it is free, you need to call and reserve a space in this workshop.

This is a monthly series, and if you are in or near NYC and have lupus, what a great resource.

I tried to upload their gorgeous flyer onto this blog to no avail (I'm not the most tech-savvy blogger on the planet). So I'm pasting in the info here. Bottom line- here's the info.

Thursday, Sept 29, 12-2 PM
Place: Conference Room A, 2nd Floor
Topic: Living Well, Despite Lupus!

Sara Gorman, Health Blogger, lupus patient of 10 years and author of “Despite Lupus: How to Live Well with a Chronic Illness”

The SLE Workshop is coming up!

If you have lupus, you know first-hand the emotional and physical challenges that can accompany life with a chronic illness.

Please join us for this special guest presentation by author and health blogger Sara Gorman, who will share her perspective on her most important lessons on living well, despite her illness.

Sara Gorman was diagnosed with systemic lupus at the age of 26. As she relates in her book, she was determined not to let lupus rewrite her plans for the future, as she fought to maintain her demanding work schedule, social life and invincible attitude. But after four years, she felt she was “fighting life, not living it.”

In Sara’s words, she began to “work with the disease rather than against it, and decided to start living well – despite lupus.” Learn about the steps she took to redirect her life to achieve this.
A native of Indiana and graduate of the University of Notre Dame, Ms. Gorman resides in Virginia with her husband & two young daughters.

After the presentation, Ms. Gorman will join us for an informal group discussion where members can share their thoughts and experiences regarding this personal topic, as well as an open discussion.

You will also have an opportunity to meet Lysa Silverstein, our new Social Work Intern and SLE Workshop Coordinator. Please contact Roberta

PLEASE CALL TO ATTEND: To attend the workshop or for additional information, please call Roberta Horton, LCSW, ACSW (212) 606.1033 and leave a message with your name and phone number. Space is limited.

The SLE Workshop is a program of Hospital for Special Surgery’s Department of Social Work Programs. Summaries of selected programs are available on our Hospital’s website at www.hss.edu/SLEWorkshop

~~~~~~~~~
Hope to see you there!

Carla
Carla Ulbrich
The Singing Patient
www.thesingingpatient.com

Causes of Autoimmune Diseases

2011-09-06T14:53:00.005-04:00

Last time, we discussed possible reasons why more women than men develop autoimmune diseases. In the case of lupus, it's 9 women for every 1 man who is diagnosed with lupus.

Slate.com offered some possible theories for the causes of autoimmune disease, based on the gender imbalance: genetics, pregnancy/ birth leaving another person's cells in your body, and estrogen. Here's the problem with these theories: the new conventional wisdom is that genetics do not really cause disease. As Dr. Oz would put it, "Genetics load the gun; lifestyle pulls the trigger." Wish I had a better, less violent metaphor, but it does get the point across. Genetic tendencies are not our inevitable fate. Just because I'm in a bar, it doesn't mean I'm going to get drunk. (Slightly less violent metaphor?)

Now before I sound like I"m blaming the victim, let me state 2 things. One, I've been living with lupus for 20 years, so I'm talking about me, too. Two, many of us are doing things we *think* are good for us, usually because we've been told that it is, but it turns out to be a problem in the long run. I'm trying to empower us to get better, so please take this not as fingerpointing at the sick person, but fingerpointing at what is possibly making the person sick. I honestly believe that none of us wanted or chose to have lupus.

In my opinion, everyone with an autoimmune disease should be tested for the following:
1) Vitamin deficiencies, especially Vit. D
2) heavy metal poisoning, including mercury
3) Celiac disease and Gluten intolerance
4) other food allergies
5) Candida overgrowth

Any one of these, and certainly a combination of these, is going to cause problems. And if left untreated, the problems will cause problems. Multiplying like rabbits. And not the good cute rabbits who lay chocolate Cadbury eggs on your lawn on Easter. Mean rabbits.

And here's the thing I was talking about before- when we do stuff we think is good for us, like stay out of the sun because we have lupus, we worsen our vitamin D deficiency. We *must* supplement with high quality vitamin D if we are avoiding the sun, or live north of Maryland, esp. between October and May. Symptoms of vitamin D deficiency include depression, chronic fatigue, weight loss, diabetes, heart disease, stroke, osteoporosis. http://www.vitaminddeficiencysymptomsguide.com/

There are so many examples of us doing something that's not even fun, thinking we're making ourselves healthier when in fact we're making ourselves worse. You would think if you're going to pay the price for bad decisions, you could at least enjoy yourself along the way. We get a cavity, so we go to the dentist, and he gives us a filling. that's made of MERCURY, a known toxin, extremely poisonous. It can cause rashes, muscle weakness, kidney function, memory impairment, neurological problems, insomnia (is this sounding like lupus to anyone?). BTW, there are non-mercury fillings available.But you need to ask your dentist if (s)he is mercury-free. If your filling is silver in color, it definitely has mercury in it, as much as 55%. http://en.wikipedia.org/wiki/Mercury_poisoning

We think we're being healthy eating whole wheat bread. Sounds like a nice hearty, healthy food. But not if you have Celiac disease or gluten intolerance. Celiac causes malnutrition. If you have Celiac and continue to eat foods that contain gluten, it will kill off all the villi in your small intestine and make you unable to absorb nutrients from your food. You can then stuff yourself and still be starving from malnutrition. Now there's a magic trick I don't want to volunteer to be a part of. Milk products- another food we were told was healthy- is also a problem for people with Celiac. http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms . People gluten intolerance suffer the same symptoms as those with Celiac, but the blood tests come out different. http://gluten-intolerance-symptoms.com/

get tested for other food allergies. 100% of lupus patients have food allergies. 100%?! And food allergies come in 2 sizes: immediate (you know these- you eat shrimp, you have hives a few hours later; you eat peanuts, you can't breathe; me, I eat pineapple and my tongue immediately itches then hurts for 3 days- those kinds of food allergies are obvious); but then there's the delayed reactions- you could eat something then get joint pain that doesn't show up for as long as 4 days later. Who's going to figure that out? Well, a blood test, that's who. Or, alternately, the elimination diet. http://en.wikipedia.org/wiki/Elimination_diet . People blame autoimmune diseases and symptoms on genetics, sin, bad karma, or some symbolic psychological issue manifesting itself... Yeah, OK, and maybe I'm just allergic to cheese. On top of whatever I started with, I developed so many new allergies after taking prednisone, I practically needed to live in a bubble. A latex free bubble that is.

Here's another one, and all too common. We get the flu or bronchitis and we go to the doctor- the responsible thing to do- and he gives us antibiotics. Which, if you have a cold or bronchitis, doesn't really help, because those are viruses, not bacteria. But we take it anyway to "avoid getting a secondary infection," but really because that's the only trick the doc has up their sleeve. When the only tool you have is a hammer, everything looks like a nail. Well, when you take antibiotics, they kill off all the good bacteria in your digestive system. Yeah, our digestive system is filled with all kinds of cooties, and we need those cooties. Those good cooties are what we need to multiply like (good) rabbits. Once the good cooties are killed off, the bad cooties, especially candida can take over and wreak havoc. And not just the "inconvenience" of having a smelly yeast infection or thrush, which are gross, but I'm talking systemic problems: brain fog, digestive problems joint problems, exhaustion, irritability, headaches, rashes, sugar cravings, and worst of all- zits! oh Lord not zits! http://www.candidasymptoms.net/#candida_symptoms . Know what else causes candida overgrowth? Steroids. Prednisone. Oh the irony.

OK, that's a lot to chew on, even though it's gluten free. And you could just go on a candida diet or gluten free diet without getting tested, but trust me. Both of those diets are so challenging, especially at first, that you'll want to know for sure that you need to be on them. It will help you stay motivated. You can get tested for heavy metals, candida antibodies, celiac and gluten intolerance antibodies, and vitamin deficiencies and most of these tests are just blood tests. The celiac one can involve an endoscopy and that's a bigger deal, but if you have celiac and find out, it would be a life-changing piece of information.

Until next missive-
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich

"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 the book! http://tinyurl.com/348hroc

Why Do More Women Than Men Get Autoimmune Diseases?

2011-09-02T18:32:00.001-04:00

Interesting question, isn't it?

OK, I stole this question from another article, but believe me, the question has crossed my mind many times, as well as anyone else's who's been to any autoimmune support group.

9 out of 10 lupus patients are women.

Slate.com attempts to throw some theories out there in this article http://www.slate.com/id/2302917/ as to why more women than men are suffering from these diseases. (Just to be clear, I don't want more men to get these diseases...) :

Theory 1: Estrogen vs. testosterone. Estrogen boosts immune response to infection. Testosterone suppresses it.

Theory 2: Genetics. Women have 2 X chromosomes; Men 1X, 1 Y. That 2nd X has something to do with immunity.

Theory 3: microchimerism, the presence of someone else's cells in your body.This happens during pregancy and birth.

IMO, only the first theory makes any sense.

The second theory is too vague, and just another stab-in-the-dark, blame-everything-on-genetics-without-any-actual-proof statement.

The third theory is based on the assumption that all women are or will become pregnant. a great many women with autoimmune disease have never been (and may never be) pregnant. And what about those who get the disease before getting pregnant? And what about the 10% of lupus patients who are guys who are extremely unlikely to have ever been pregnant? Doesn't hold up. I hope no one is pouring money into researching this theory.

Which theory would I would follow down a rabbit hole with my resaerch dollars? Theory 1, based on the difference in hormone levels. It meshes with the patient demographics- most women develop these diseases in the years their estrogen is highest, age 20-40.

And, since we're looking for things girls have that guys don't here are some other theories about the causes of autoimmune disease:

1) slumber parties
2) pillow fights
3) bras
4) lacy underwear
5) lipstick
6) barbie dolls
7) gossip

Who wants to fund my research on whether gossip causes lupus? Rumor has it, it does...

_______
Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs

Sjogrens vs Lupus: Smackdown

2011-09-01T01:40:00.004-04:00

OK this is going to be a long rant. I'm mad.

I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.

What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"

Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.

Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.

Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.

I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )

I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.

20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.

It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"

Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?

The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens.

Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. Whatever.

Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.

Sjogren's syndrome symptoms include:

dry eyes
dry mouth
joint pain or inflammation (arthritis)
Raynaud's phenomenon
lung inflammation
lymph node enlargement
kidney, nerve, and muscle disease

(from http://www.medicinenet.com/sjogrens_syndrome/page2.htm#3whatare)

lupus symptoms which overlap with Sjogren's symptoms:

Raynaud’s phenomenon
joint pain/ inflammation
lung inflammation of the lining around the lungs (pleuritis)
Kidney disorder – persistent protein or cellular casts in the urine
Neurological (nerve) disorder – seizures or psychosis

lupus symptoms which do NOT overlap with Sjogrens:

Fever (over 100° F)
Extreme fatigue
Hair loss
Inflammation of heart lining
Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
Discoid rash – a rash that appears as red, raised, disk-shaped patches
Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
Oral ulcers – sores appearing in the mouth
Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
Abnormal antinuclear antibody (ANA)

If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.

A few things to consider asking for:

kidney function tests. Sjogren's or lupus can affect kidneys.
a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
consider bringing a trusted friend to your appointment with you. Doctors are used to that.

End of rant, and a few reasonable parting words:

Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and

And if you are a praying person, that doesn't hurt either.

My best wishes to those who are struggling for a proper diagnosis-

And one last thing... %$#*&*#*!!

Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"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 the book here: http://tinyurl.com/348hroc

13 Diseases that are Difficult to diagnose

2011-08-01T16:31:00.003-04:00

Here we go again. Those of us with lupus are on another list of "diseases that are hard to diagnose."

Check it out:
http://www.insurancequotes.org/13-most-difficult-diseases-to-diagnose

The list includes:
- ALS (Lou Gherig's)
- Fibromyalgia
- Lupus
- Crohn's
- Cushing's Disease (which is basically the same effect as being on a lot of prednisone, only your body is creating the cortisol)
- Celiac Disease
- Chronic Fatigue
- Lyme Disease
- Parkinson's
- depression and bipolar disorder
- hypothyroidism
- MS
- Mesothelioma

IMO, this article, while interesting and a good jumping off point for debate, is full of excuses.
Patients are needlessly suffering untreated for years on end not because these diseases are hard to diagnose but because our system and its priorities are seriously messed up.

And now, my 9 *real* reasons these 13 diseases are hard to diagnose:

1- Assumptions. Doctors don't take patients' concerns seriously and assume they are "just depressed," so it takes several visits before they even start looking for an actual physical problem. This is markedly worse when the patient is female. If you aren't bleeding profusely, you're probably imagining your problems and you just want attention (oh yeah the doctor's office is where I go when I want attention. HA!)

2- Ridiculously short time with patients. The cost of overhead (rent, office staff, etc.) is so high and insurance companies put the squeeze so hard on doctors by discounting allowable payouts, that if doctors spend more than 8 minutes with a patient, the doctor is losing money.

3- Priorities are upside-down. Doctors do not realize or believe they are in the business of customer service, and that without patients, they have no medical practice. And yet, when we go into their offices, we are last priority. After the office staff, the insurance company, the pharmacist, the lab techs, the drug reps and the pizza delivery guy have all been taken care of... OK, now we can see you, Mrs. Jones. Oh she left? Well there's more where she came from. She's probably a hypochondriac anyhow.

4- Patriarchal CEO attitude. Most American doctors want to operate in a top-down, giving orders kind of manner, rather than a cooperative partnership with patients, even though the patients may have more knowledge than the doctor on their own condition. Some doctors are threatened by empowered knowledgeable patients and get angry when we go looking for answers in chat groups and on Web MD. I had a doctor fire me as a patient because she didn't like me "challenging her authority" by bringing in articles and asking questions. And she mocked me for trying alternative medicine. Many don't want to listen to us when we ask for specific tests or for them to consider we might have a certain disease. Look I've got all day to check it out and my life depends on it, so let me be involved!

5- Poor listening. American doctors (as a group, with some exceptions, but as a group) have terrible listening skills. How can you figure out what is wrong with me if you won't listen? I had doctors tell me I had bronchitis- and I wasn't coughing! I had no phlegm! I've had bronchitis at least a dozen times, and this was not bronchitis. But they wouldn't listen. Then they gave me antibiotics which made me even sicker.

6- Gadget-happy. American doctors rely so much on technology and fancy tests that they have lost touch with their intuition. They have a reputation among the international community of being test-happy and making every event far more expensive than necessary.

7- For-profit health care. As long as making a buck off people's suffering is the number one priority- and it is for big pharma, insurance companies, and even hospitals- the priorities are going to be screwed up. The kindest doctors in the world can only operate so effectively inside this system. If they want to be free of the demands of these hungry hungry hippos, they have to operate a cash-only, no insurance, no office staff (no overhead) practice. And then they can spend all the time they like with patients, relax, and let it be all about the patient's suffering and how they can ease or end it.

8- It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign.

9- Reluctance to diagnose. doctors don't *want* to diagnose these diseases. Lately it seems to be harder and harder to get and to hang onto a lupus diagnosis. I can't speak to whether that is the case with MS or ALS or Parkinson's, but from what I'm hearing from other lupus patients, doctors seem to be going out of their way to avoid diagnosing people with lupus, and even trying to un-diagnose people with lupus who have been living with it for years. It used to be simple- if you have 4 of the 11 classic symptoms, you were diagnosed with lupus. Now it seems they want you to have all 11 plus certain blood tests (ANA, anti-DNA, C-reactive protein, etc.). It's like they've run out of room so they had to raise the standards. Like when a university has too many qualified applicants, so they raise the minimum SAT score.

I don't know if the government is pressuring doctors to avoid the lupus diagnosis so they don't have to give disability status, or if the CDC doesn't like the statistical trend of exploding rate of autoimmunity, so instead of making people healthier they tweak the numbers by refusing to diagnose... Call me a conspiracy theorist, but there's something weird and fishy going on here when the same symptoms that would have got you diagnosed 20 years ago are no longer sufficient for definitive diagnosis. I'd really like to know what's going on behind closed doors on this one.

And those, my friends, are my 9 reasons which these 13 (and many other) diseases are supposedly hard to diagnose.

Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
get the book! http://tinyurl.com/348hroc

The Straight Poop

2011-07-28T02:49:00.000-04:00

OK, people, it's time to give you the straight poop. Well, actually it's more likely shaped like a question mark. Yesterday, I ate so many carrots, including a glass of carrot juice that today my poop was orange. Upon sharing this, I heard back from my friends who eat lots of spinach and get green poop, and those who eat loads of beets and have fushia poop. Who says poop has to be brown? Poop the rainbow my friends!

The great thing about eating something brightly colored, then seeing it in your poop, is that you now know how long it takes food to pass through your digestive system. If you've ever changed diapers, you know that just a few hours after feeding the baby peas, you get green poop. Healthy babies digest very quickly.

The fact is, as we get older, most of us here in the US don't poop enough, and we don't look at our poop, and neither do our doctors. But poop and poop habits (or lack thereof) can tell you a lot about a person's health. So let's talk poop.

According to Dr. Oz, who talks about poop a LOT on his show, "You should see a doctor if you poop more than four times a day or if you don’t go to the bathroom at least every other day. To help cure constipation eat things like fiber, probiotics (yogurt, kefir) and drink lots of water. You should also read Dr Oz’s segment on Constipation Causes, because there are other things that can constipate you, even if you drink lots of water and eat plenty of fiber. Also, overuse of laxatives can cause constipation."

Know what else causes constipation? Narcotics.Yes, voice of experience here.

Know what can cause the other extreme, over-pooping? Celiac disease, IBS, Crohn's, and food sensitivities, such as gluten intolerance or lactose intolerance (anyone here watch the Big Bang Theory where Leonard always has a poopfest if he eats dairy? New meaning to "big bang"...). And in my experience, overconsumption of caffeine. Pooparama!

Speaking of Dr. Oz and his frequent poop-themed segments, I thought bodily functions were not allowed on network TV... unless, I guess, you have a white lab coat on. hmm, maybe if I sing my poop songs in a white lab coat, I can get onto more radio stations. Wait... you can't see my clothes on the radio...

Well, this is internet, and for now it's uncensored, so please enjoy today's theme song, The Colon. Keep eating healthy fiber, drinking plenty of water, and enjoying your quality time in the small room with one seat (hopefully only one seat).

Happy healthy pooping to you all!
And in the spirit of Triumph the Insult Dog, this was a great blog topic....
for me to POOP ON!

Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc

Fat, Sick, and Nearly Dead

2011-07-26T02:14:00.004-04:00

Fat, Sick and Nearly Dead! I can relate to that. Except I was super-skinny, sick and nearly dead. Then I went on prednisone and that fixed the skinny part quick!(Thankfully I've been off it now for 4 years).

Fat, Sick and Nearly Dead is a great new documentary about Joe Cross, who was 100 pounds overweight and suffering from a painful autoimmune disease. And also on prednisone. I just got back from a viewing of the movie at Whole Foods, where Joe himself was on hand to answer questions and lead discussion.

In my house, spoiling movies by telling too much about what happens is a big no-no, punishable by the other person getting to choose the next 6 movies. But I can tell you what's on the movie's website, which is that he decides to go on a 60-day juice fast and travel across the US, talking to people along the way about food, lifestyle choices, and juicing. Then he meets a guy at a truck stop who has the same exact rare autoimmune disease. It's a great story.

Joe is spreading the message about the incredible healing power of fruits and vegetables, and also of fasting (juice fasting that is). He is changing hearts and lives. He's an inspiration. He's also Australian. And.. tall. (well, I'm only 5'2"). Post-movie at the Whole Foods in Princeton, NJ:

The movie is inspiring, eye-opening, and at times, humorous and light-hearted. He doesn't preach. He just leads by example.

You can buy the DVD at his website, or watch it on netflix (available at netflix via streaming only at present). http://www.fatsickandnearlydead.com/reviews/

Cheers!

Carla
Carla Ulbrich, The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc

Primary Food

2011-06-28T18:48:00.001-04:00

Do you ever wonder why some people can just eat junk food and sugar, and smoke cigars, and still be healthy? It hardly seems fair. And then you meet some people who are super-careful with everything they eat and they seem so miserable and look pale and weak.

Often when we see something like this we chalk it up to genetics or good luck, but there is one factor that can’t be overlooked, and that factor is referred to by Joshua Rosenthal (head of the school Institute for Integrative Nutrition) as Primary Food.

Primary food... what does that mean? It means your work, your relationships, the fun you have, how meaningful your life is in general, and how much you are enjoying it.

It seems that how happy you are with your life may be even more important than what you put in your mouth, as far as determining how healthy you are.

Think about it... the times you’ve been in love, or consumed by joyful work, such as making music, or doing art, or anything creative- you forgot all about food, didn’t you? And yet you felt great.

My acupuncturist once said to me that you send little “live” and “die” messages from your brain to your body all day long. So it’s really important that you have something to live for. Not just something to *not die* for (people need me at work and at home) but something to *live* for (I can’t wait to start on that project, or go camping with my kids, etc.).

So that, my friends is why I’ve been absent from the blogosphere for the last 3 weeks. I decided to fill up on some primary food, because my life was getting out of balance. Too much grunt work at the computer (zillions of e mails, networking, book promo, etc.) and not enough joy.

I decided to go back to this awesome music camp in New Mexico where I taught during the summer 1999-2004 and have myself a week of fun, sun, mountains, stars, great kids, awesome fellowship with other teachers and music, music, music. I’m pooped, my clothes are covered in camp dust, and I had a blast. I feel full.

So... primary food! What brings you joy? Who are the meaningful relationships in your life, and are you getting enough time with those people? Can you schedule more Vitamin F (fun) into your week? Tell me about your primary food- who in your life fills you up, what you like to do that makes you feel alive and happy to the core, and so on.

Having Fun with Wigs (guest blogger)

2011-06-10T02:24:00.003-04:00

Today we have a guest blogger, with a post about wigs. Some helpful hints and resources here. I have lost my hair in varying degrees 3 times now because of lupus and prednisone combined. Both the disease and prednisone cause hair loss.

The first time I lost my hair, I just wore hats everywhere and tried (unsuccessfully) to hide from friends and family with cameras. In 2002, thanks entirely to one of my sweetest girliest friends, I got and wore a wig. I spent $40 on it, and it was worth every dime and more. I felt so much better about going out, and going out and seeing friends was really therapeutic for me.

Though I’m pleased to have my full head of hair again- so full in fact, I don’t think I could cram it all under a wig… I’m now a fan of wigs, when the situation calls for it. As always, I welcome your thoughts and comments and experiences in the comment section.

Now here’s our guest blog:

Having Fun with Wigs

Lupus is a chronic autoimmune disorder in which the body's immune system attacks its own healthy cells. This disease can lead to several complications, including (but not limited to) joint pain, swelling and sometimes even alopecia (hair loss).

As many medical professionals, such as those in medical billing and coding, know, hair loss can be debilitating to one's self esteem, often leading to dissatisfaction with one's own appearance. However, an extremely viable and often overlooked solution to hair loss is the use of a wig. If worn appropriately, a wig can look like an authentic head of hair, and oftentimes wearing wigs is an easy, hassle-free way of changing one's hairstyle frequently with little time or effort. Once a person grows accustomed to the idea, wearing a wig can become a successful and enjoyable experience.

Finding a Wig Store:

The first step in obtaining a wig is knowing where to go. A plethora of wig Web sites (such as Wilshire Wigs, wigs.com, Wig Warehouse) are available with just the click of a button, offering a wide selection of wigs. Visiting a local wig store, which can easily be found through the phone book or a Google search, allows customers to buy a wig in person.

Choosing a Wig:

Next in the process of obtaining a wig, consider factors such as face shape, skin color, hairstyle preferences. Visiting a brick-and-mortar wig store allows a person to get live help, and perhaps to try on wigs before purchasing them. Comparatively, online wig stores often offer informational tutorials about what types of wigs fit certain types of faces, allowing a person to peruse the selection in the privacy of their own home. Either way, many resources have been made available to clients to help with choosing the right wig.

Wig Cost:

Some wigs can be quite expensive, sometimes costing hundreds of dollars. For the thriftier customer, visiting wig outlet stores or purchasing clearance wigs may be a better option. These are often listed in the "outlet" or "clearance" sections of online wig stores, and sell for as little as $15! Another advantage of buying affordable wigs is that it provides one with the opportunity to buy multiple wigs, such that one's hairstyle can easily be changed at will.

Getting Your Health Insurance to Reimburse You for Your Wig Purchase:

People suffering from lupus-induced alopecia (hair loss) may be eligible for reimbursement by their health insurance company for wigs purchased after their diagnosis (click here to learn more). Research your health insurance company's list of "covered expenses;" there should be a section dedicated to prostheses and prosthetic devices.

Some tips when applying for insurance reimbursement:

- refer to the wig as a "cranial hair prosthesis." It is crucial to avoid the use of the word "wig" when filing a claim for reimbursement, in order to ensure that it is taken seriously and accepted.

- have your physician sign your completed insurance form and fill out a "prescription" for a cranial hair prosthesis, detailing the source of alopecia and accentuating the fact that the purchase of this "device" was for emotional well-being, not for cosmetic purposes.

-Insurance reimbursement policies may vary from state to state, so it is important to be aware of what the policy is for your area before claiming reimbursement. One can also find more information by contacting your insurance company or visiting the company’s Web site.

Some final thoughts:

Once the technicalities of buying a wig are taken care of, the process of choosing and shopping around for a wig, and then wearing it, can be quite enjoyable. One good thing about wigs is that a person need not concern themselves with their own hair. No longer will a person be subject to lamenting their hair's natural grease or frizz or flatness.

If a person wearing a wig is dissatisfied with their hair, the solution is quite simple: remove the wig. This allows one the opportunity to be much more adventurous with their hairstyles than before. A person can try out bangs, short hair, long hair, braids, anything, without the long-term commitment that one would have to suffer if it were their actual hair. Multicolored wigs or wigs with unusual colors (such as fiery red, neon pink or lime green) can be tried out at will, worn to costume parties, dance clubs or even on a day in the park with friends, just for fun.

Although lupus and alopecia initially induce feelings of dread, sadness and perhaps insecurity, a dreary situation can be turned around by changing one's outlook on their own situation. A loss of one's own hair may invoke feelings of discomfort in one's own skin, but a person also loses the responsibilities and insecurities that result from having a head of hair. One now has the luxury of reinventing their appearance in literally any way they please, and the possibilities are endless!

- Patricia Walling is a web content designer for several health care

related sites. She self-identifies as a perpetual student of medicine,

and can be found most of the time researching anything related to the

field. She lives in Washington, and as a result of the long winter

there is itching for the sun to return so she can run outside and

play

Therapeutic Heat

2011-06-07T04:35:00.002-04:00

Ever get your shoulders and chest all in a wad, and you just can't get comfortable? That's been my experience all too often over the last 20 years. Now and then I get a break from shoulder pain and tightness for days, or weeks at a time, but stress always brings it back.

I've been attempting to achieve more life balance lately (you may have noticed I've been absent from the blogosphere for a few weeks) and that has certainly helped a lot.

But I've also been traveling, and that involves toting heavy bags and other various aggravations, which can bring back some of the upper body pain.

Along my travels I stopped at a friend's house and he had this great thing, a Bed Buddy, which you heat up in the microwave for 2 minutes. It provides moist heat. For me, moist heat is very therapeutic.

And using this thing, which stays warm for a while, means I don't have to worry about falling asleep with the heating pad on and starting a fire. It wraps nicely around the neck, filled with little beads of some sort (clay?). And it comes in various shapes, for different body parts- lower back, lower abdomen (for menstrual discomfort), neck, upper back. Very affordable as well.

I ordered one for myself and it was there when I got back home. Just took it off, in fact.

Glutinous maximus

2011-05-13T21:56:00.004-04:00

At my most recent book-signing, during the question-and-answer section of the evening, someone asked me "If you don't eat gluten, what's left to eat?"

I do appreciate her candor, because I wondered the same thing at first. On the other hand, it left me wondering, how much wheat is this woman eating that if you cut out wheat there's nothing left? Talk about a gluten-ous maximus!

Of course it says more about our culture's food habits than any one individual. There is so much wheat in the American diet, it's hard to imagine living without good old regular bread. Sure, man can't live on bread alone, but how does man live without bread at all?

Things have come a long, long way since the first time I went gluten free in 1994. Then, if you wanted some straight up carbs, it was rice cakes, rice cakes, and more rice cakes. Now, I'm pleased to inform you, there are all kind of options in both the grocery store and even in some restaurants. Amy's makes a frozen rice crust pizza that is at many grocery stores. Bob's Red Mill makes a dough mix you can use to cook up your own fresh pizza at home, as well as a bread mix that is really fantastic; Udi's makes delicious GF bagels and bread; I've even seen gluten-free bread crumbs in the grocery store; Uno's Chicago grill serves GF pizza on their menu; PF Chang's has a tasty gluten-free Chinese menu; there are numerous GF bakeries popping up around the country. (find GF restaurants here: http://www.allergyeats.com/ )

I also just learned about a gluten-free expo in October in Dallas, for those feeling adventurous: http://gfafexpo.com/

And here is a very popular gluten-free blog I just found: http://www.adventuresofaglutenfreemom.com/

That being said, remember that a lot of the healthiest food you can eat is already naturally gluten-free, so don't forget to include in your meals some brown rice, beans, nuts (assuming you don't have nut allergies), fruits and vegetables, even fish in your GF diet. Oh, and rice cakes. :D

One more point that came up at the book signing: no, I do not believe the entire country needs to be gluten-free. In Europe, where there is far more awareness of gluten sensitivity, about 20% of the population is diagnosed with Celiac disease or gluten intolerance. Here, it is only 1%. So, we probably have about 19% of the population running around undiagnosed, thinking their problems are genetic or random, not realizing they are caused by consuming gluten. So, I do think that anyone with chronic health conditions might want to try being strictly gluten-free for a month and keep a symptom log. If it makes a difference, then consider staying gluten-free.

For those of us already committed to being GF, there's really no need to feel sorry for ourselves because we can't have gluten. There's a substitute for nearly every gluten-laden food out there. On top of that, if we've identified the one ingredient that we can eliminate, and thereby drastically improve our health, we are fortunate. Now get off your glutenous maximus and find yourself some tasty GF food! :)

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

It's Never Lupus? May 10 is World Lupus Day

2011-05-10T12:10:00.000-04:00

If I hear "It's never lupus" one more time I'm going to personally track down the writers of House MD and force them to clean my toilets with their tongues. And we have 3 toilets.

I have a few questions for these writers:
Why are you running an anti-awareness campaign? Would you do this for any other equally terrible disease? Would you say "It's never cancer?" or "It's never MS?" or "It's never Parkinson's?"
How about "It's never a heart attack?" No, because if this were a comedy club, you'd be booed off the stage.

Why does anyone think "it's never lupus" is funny? My only guess is that it's because the word "lupus" sounds funny, like dodo bird or cuckoo clock. I wish we could rename the disease to better reflect how awful it is. How about "crapstorm?" No, still too funny.

It's never lupus... Having had lupus for 20 years now, I've had it cause anemia, kidney failure, stroke, hair loss, weight loss, congestive heart failure... oh, I guess none of that ever happened either.

I was watching House MD- the episode where the patient was in Antartica in a lab and had to be examined by House long-distance, over teleconference. While he was brainstorming about all the possible things she could be suffering from, one of the things House guessed was... LUPUS!!! (this coming from Mr "it's never lupus!"). But in order to keep their running "joke" intact, they referred to it as "SLE." (systemic lupus erythmatosis). Nice way to have your cake and eat it too, a-holes.

Because there are 1.5 million people or more in the US alone with lupus, it's just a matter of time before someone on the House MD writing staff (or someone in their family) develops lupus. I don't wish it on them, but the odds are good. Oh wait, I forgot, there's no such thing as lupus.

What a relief then. I'll just stop getting blood tests and chalk up my years of symptoms (and by "symptoms," I mean stroke, kidney failure, congestive heart failure) to hypochondria. Or maybe it was psychosomatic. In which case, if kidney failure is psychosomatic, then everything is. Cancer, MS, all of it.

And the world is flat, and we never landed on the moon.

"It's never lupus?"- it's never funny.

Prednisone

2011-05-05T15:56:00.000-04:00

In honor of lupus awareness month, today's topic is the drug almost all of us with lupus are faced with having to take: prednisone.

Or as some of us pred-vets call it, dreadnisone.

It is used for everything- rashes, asthma, sarcoidosis, inflammation of any kind.
If they don't know what to do, throw prednisone at it. And it often works.
The problem is the side effects. And side effects seems like such a dainty word for things like osteoporosis, cataracts, diabetes, hair loss, obesity- is it really just a "side effect" when it can be classified as a disease?

Yes, prednisone saved my life. But if I had stayed on it, I would have ended up with even more health problems.

But what I really want to know is this:
Why, when my cat and I were both on prednisone (he had a flea allergy)- why, I want to know, was his cherry-flavored while mine tasted like Ajax? Discuss amongst yourselves, and sing along to the prednisone song:

May is lupus awareness month

2011-05-02T22:34:00.000-04:00

How do I say this? Happy lupus awareness month? That seems really inappropriate. We're not really celebrating the fact that this disease exists. On top of that, I'm a day late in getting started commemorating the beginning of this month.

I think we're finally getting it together. For a while, October was lupus awareness month. Then it was October for some lupus groups and May for others. And it was purple ribbons for some lupus groups and orange for others (I think that's still the case). And then there's House, MD. He's no help at all. I'll save him for another blog.

All that aside, here we are. For a disease that has over 1.5 million people diagnosed, lupus still needs some serious help in the awareness department. One of the reasons we need awareness is to cut down on the odd reactions we get from other people when we're finally diagnosed.

The comments I got when I was first diagnosed ranged from hurtful to just weird. Here I present to you, from my book (How Can You *Not* Laugh at a Time Like This?," The Top 10 Annoying Things to Say to Someone Who's Just Been Diagnosed.

Product review and giveaway: Pain Relief Cream "Topricin"

2011-04-21T19:55:00.002-04:00

Welcome to the first-ever product review/ giveaway on this blog!
The product we're reviewing and giving away (one gift basket only) is Topricin, a homeopathic pain relief cream.

I've been using it myself for the last few days. Conveniently (or not, depending on how you look at it), I've had significant discomfort this week after driving 800 miles in one day (by myself). So I had some legitimate pain to try out this cream on. And I gotta say, it really helped.

One the pain scale of 0-10 (zero being "no pain at all" and 10 being "i'm going to jump off a roof if this pain doesn't stop!"), I'd say for me this cream is completely effective all the way up to an 8-level pain. If something is 9 or 10, I'll try the cream first, then if it doesn't work, resort to taking advil or some other pill out of my cabinet.

Because no pharmaceutical or over-the-counter drugs are without risk (or side effects), I am always in favor of finding a more natural solution to life's little problems (and the big ones, too).

Topricin is all natural. Being homeopathic, it works with your body to heal the source of the pain, rather than only suppressing symptoms. Although it does also relieve symptoms.

The website suggests using it for some very painful conditions, including fibromyalgia, plantar fasciitis, carpal tunnel and neuropathy.

Topricin, from what I can tell, comes in 3 formulas:
1) general pain relief cream
2) "junior" pain relief (for kids)
3) foot pain relief

They are available in tubes, tubs, or "single serving" packets (great for travel/ in your purse or backpack). It's non-greasy and has no smell. I give it 2 thumbs up!

So, I have this big beautiful basket of topricin to give away!

How to enter:

Mandatory: In order to enter to win, just leave a comment on this post. Don't forget to include your email address (ex: SpiffyStuffBlog at gmail dot com --like this to avoid spamming from bots). You can't win if I can't contact you. ;) This counts as one entry.
Optional:

visit me on youtube (www.youtube.com ), find a song of mine that made you laugh, and come back here to tell us all about it in a comment. Again, don't forget to include your email address
Instead of limiting this contest to those who follow my blog, I'm going to make following this blog a separate entry. Make a separate post saying that you follow this blog. Again, don't forget to include your email address. This counts as one entry.
"Like" (hit the "like" button) Carla's music page on facbeook (http://www.facebook.com/ ) Please post your Facebook username (probably just your full name) so we can verify this entry. Again, please include your email address. This counts as one entry.
Advertise this contest: A Tweet, a Facebook mention, a blog post about this contest on your own blog, anything like this would count as an additional, separate entry. Be sure to post links or usernames so that your shout-out can be verified. And finally--don't forget to include your email address.

This contest will close promptly at 10:00 p.m. EDST on Wednesday, May 18, 2011.

Shortly thereafter I will pick a winner based on their post number which will be picked by the free number generator at Random.org. I will post the winner here for all the world to see, and notify the winner to see where/how to ship your fabulous gift basket of Topricin. Once the winner has been confirmed, we'll send the prize your way.

Meanwhile, you can visit the website of this giveaway's sponsor right here:
http://www.topricin.com/

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

Therapeutic Humor

2011-04-11T21:58:00.001-04:00

I've just returned from the AATH conference. AATH stands for Association for Applied and Therapeutic Humor. http://www.aath.org

You'll note by the name that, yes, they promote humor, but they also specify that it be therapeutic. Meaning it helps, not harms. Anyone who spent any time on the school playground knows that humor can be harmful and even cruel. But humor can also uplift and even break the spell of sadness and despair.

Humor was a tremendous help to me at the worst points in my illness, and continues to be that spice that makes every day a little better, and every person I meet easier to get to know.

So how do we use humor in a way that is safe and helpful? My thoughts at the moment are these:

- Create distance. Comedy is pain plus distance. The distance can be time or just gaining a new perspective on things; looking at things from a distance, even though they are recent or even ongoing. You may have heard that comedian Gilbert Gottfried was fired from his gig as voice of the AFLAC duck because he made jokes about the Japan Tsunami very shortly after it happened. As they say in the comedy clubs " Too soon!" There wasn't any distance yet. And some things are never funny. Which brings us to:

- Stick to what you know personally. Do not make fun of other people's problems if you have not been there. I don't make jokes about being black (because I'm not), or Jewish (I'm also not), or even any illnesses I haven't been through. it's very important to me that I stick to my own experiences so that the audience knows I am not mocking their pain. I can make fun of my pain, or of situations, or of groups that I belong to (Southerners, insomniacs, women, musicians, people with lupus)- as long as I'm speaking in terms of "we." Look, we've all done enough stupid stuff in our lifetimes to write hours of comedy. We don't need to make things up.

- Use comedy to build up and unite, not to tear down and make one person or group superior to another. Put-down comedy (Don Rickles, Lisa Lampanelli) can be undeniably funny, but it makes me feel icky afterwards. I think some comedy is just kind of neutral, like Seinfeld and Jeff Foxworthy (observational comedy that points out the absurdities in life)- it doesn't harm anyone, but it isn't particularly view-changing. Making people laugh has enough value in itself, especially when you can do so without harming anyone. But then there is humor that is not only funny, but therapeutic. It actually makes you see things differently (Christopher Titus). I hope I can become one of those people. Someone who makes a point with their comedy- educates, enlightens, gives hope.

Who are some comedians who you think are making a positive difference with their humor?

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

Gluten free is Bulls**t!?

2011-04-04T14:19:00.003-04:00

Every now and then I'm encouraged by the availability of gluten-free foods out there, both in the frozen foods section and in restaurants. The restaurant we went to yesterday ("Ciao!") had a sticker on the front door for glutenfreerestaurants.org. I thought "how cool! we're making progress! Maybe I'll be able to order something other than salad when I go out to eat.

But this article in the Daily Post proves we still have a lo-o-o-o-ng way to go.
http://tinyurl.com/65xbdaf

"Gluten free is bull----!!" Damian Cordone, of Piscataway, N.J., mouthed off in a March 10 Facebook photo wall post. "Flour and bread have been a staple of life for thousands, THOUSANDS of years. People who claim to be gluten intolerant don't realize that its all in their disturbed little heads."
Cordone added that he lies to diners who make the dietary request.

... And then he proceeds to serve them *high-gluten* pasta.

Who's really got the disturbed little head here?
I don't know where this hostility is coming from, so I'm just going to assume it's ignorance.

Would he take someone allergic to bees and shove them into a beehive?

Probably not, because the other problem with creating understanding for gluten intolerance is that the reaction to gluten is not going to happen right there at the table, like an anaphylactic reaction to peanuts (or bees).

Unfortunately there are some people who are going gluten-free thinking just to lose weight, and that -ahem- tips the scales of opinion against those of us who need to be gluten-free for more serious health problems.

Being gluten-free is not convenient. I do understand it's something of a fad at present, but for many of us, it's not a fad, it's a requirement.

Here is a webpage where you can find gluten-free friendly restaurants.
http://www.allergyeats.com/

All the same, I would just avoid ordering pasta when eating out. And I wouldn't eat anything cooked by chef Damian Cordone, because that man has issues. If he's that angry about gluten-free requests, imagine if you sent the food back because it's undercooked. He'd probably throw it on the floor and spike your sauce with Ajax. He needs a) anger management b) a different line of work c) both d) to develop gluten intolerance himself so he can finally "get it."

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

My encounter with Richard Simmons!

2011-03-30T00:42:00.002-04:00

Dear bucket list,
You are now one item shorter. I had a *lot* of fun on my 2- week tour of the West Coast, but this was the absolute highlight: taking a class at Richard Simmons' Aerobic studio! (Yes, he's still alive!) :D

Not only is Richard alive and well, he's 62 and he's in better shape than almost everyone I know. He still teaches classes at his "Slimmons" studio in Beverly Hills (when he's in town), and I was lucky enough to be in town when he was there.

Now first of all, I had to borrow sneakers (thank you, Karen Nash! So glad we are the same size and I disagree, 7 1/2 is not big!). I left my sneaks at a friend's house at my previous stop in Niles, CA. Stayed up too late jamming the night before I left, flaked out. I was standing on the sidewalk talking on my cell phone to my friend in Niles, making sure that my shoes were, in fact, at his house, when a big black car rolled up, and Richard popped out and yelled "GET OFF THAT PHONE GIRL!" Seriously! I totally did - I was so surprised I pretty much just hung up on my friend (apologies to Michael McNevin- I explained later).

Then Richard ran up, gave me a hug and a kiss on the cheek and introduced himself. He then entered the building and greeted every single person there with a hug and a kiss and let me tell you it's no small class when Richard is there. He kissed a lot of cheeks, and he knows every person there.

Yes, he still wears striped shorts. His tank tops have "bling" on them now. And check it out. He still uses a record player to teach class:

He uses *real* songs, something I've always loved about his fitness videos (don't you just hate those aerobics videos with repetitious drum beats and synthesizers and no lyrics, no melody? Boring!!) But not Richard. He has great taste in music.

At one point, he had a Sheryl Crow song ("All I wanna do") and I think he was playing it at 78. It was like double-speed and sounded like the chipmunks. It was hilarious.

Here's something I didn't expect: in class, he swears a lot! Now there's a bonus you can't get on the DVDs! And when he's leading class, he kind of looks deranged. It was crowded as heck, I couldn't see or hear the cues (I just followed whoever was close to me who looked like they knew what they were doing), he blasts the music so loud I wished at one point I had earplugs.. And I LOVED EVERY SECOND OF IT!

I'm telling you he could have had me jog around the room for an hour and I still would have been grinning from ear to ear. He's so charismatic and enthusiastic. And I guess I'm infatuated. That helps.

Those of you who have read my book already know Richard is one of my big inspirations in life. But I got some surprised reactions from others when they saw how excited I was about meeting Richard. You would think I was about to meet a giant rock star. I was babbling and gushing.

I think the world of this man. Not because he is famous. Not because he's kooky and a little nuts (something I do admire). And not just because he conquered his own demons and has lost and kept off the weight for decades- he lives what he preaches. But most of all, I admire this man because he uses everything he learned from his own battles with weight and self-esteem to help others, and he does it in a way that is consistently loving, supportive, non-judmental, inclusive, caring and FUN.

As you can see, I need to drop 20 pounds myself, but here's a guy who encourages you to have fun and love yourself along the way. Don't ever change, Richard!

(Want to go to Richard's studio? Class was only $12! http://tinyurl.com/lknvzh )

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

Nutrasweet hiding in regular food

2011-03-26T04:16:00.005-04:00

A pack of regular gum. Big Red. Looks innocent enough. I mean, it's not health food by any stretch of the imagination but I was taking several airplane flights and just wanted to chomp on some gum during the landing process. I specifically bought *regular* gum, not sugar-free gum, because I am avoiding nutrasweet (a.k.a. asparatame, a.k.a. "sweet poison"). Nutrasweet has been implicated in all sorts of health problems. I personally avoid it because I don't like to spend large portions of my evenings in the bathroom. At least not involuntarily.

Well imagine my surprise when I, on a hunch, as I was chomping on a hot cinnamon-y stick of Big Red, perused the ingredient list on the box only to see this:

Aspartame. There it is on the 2nd line. Who put this crap in my crap?

I spit the gum out (into the paper of course).
This is the second time in a month I bought something that was NOT sugar free but still contained nutrasweet. The first time I bought a bag of lifesavers. I ate 3 and my stomach got all wonky. So I checked the wrapper and yup- nutrasweet.

I can't believe I used to drink diet soda all day every day, knowing now that 3 tainted lifesavers can ruin my evening. Good Lord- no wonder I got deathly ill.

Apparently nutrasweet is 16 times sweeter than sugar and cheaper to produce/ use than sugar, so manufacturers can reduce the amount of sugar (or corn syrup) they use if they mix in some nutrasweet.

The lesson here? Read the labels, assume nothing (I assumed buying regular meant no aspartame- wrong!), and if you're having weird symptoms, ask yourself if it might be something you ate or drank.

I was trying to consume candy and gum in moderation- a small piece or 2 a day. Maybe the lesson to me is to just completely stop eating crap.

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

PS- went to the grocery store today and on my trip went looking for some "safe" gum (no artificial sweeteners, not that sugar is good for your teeth, but anyway...) I looked at some Freedent and WOW! It not only has sugar and corn syrup but also sorbitol AND aspartame (nutrasweet). A hat trick!

Also, I went by the sushi area and the *sushi* at the grocery store has aspartame in it! Know what else does? Cellcept! One of the reasons I decided to wean off of it (in addition the possible "side effects" of lymphoma and fatal brain infection). I only wish whoever was poisoning people with aspartame would consume enough of it to suffer the consequences, and have an Ebenezer Scrooge "everything I'm doing is WRONG" moment...

Our diet is spreading- and so are the waistlines of those eating it

2011-03-24T19:55:00.002-04:00

In the book "Eat To Live," Joel Fuhrman discusses how the human body can adapt to any diet- whale blubber, hunter-gatherer (nuts, fruits, veggies), seafood and rice (Japan), Mediterranean diet (hummus, eggplant, lamb, olive oil) and live quite well. Any diet except one: the American diet.

This diet is referred to by alternative medicine practitioners as the Standard American Diet ("SAD" for short). Yes, sad indeed. Processed foods devoid of nutrients and packed with calories, sugar, preservatives, salt, the standard American diet is a sure path to weight gain and diabetes.

Now that our diet is spreading around the globe and indigenous populations are beginning to suffer from the same diseases Americans suffer from, it's getting harder and harder to deny that our diet is a major contributor to the suffering and disease in this country (and now beyond, as McDonald's and KFC work their way into more and more countries).

Here is an article by a man who treats soldiers all over the world, and comments on the differences in body type (due entirely to diet) in different parts of the world:
http://tinyurl.com/4mbhzos

I mean seriously, how bad for you is junk food when you can use a junk food diet as evidence in a legal defense?
http://www.snopes.com/legal/twinkie.asp
Contrary to popular belief, the defense was not arguing that the defendant murdered because he was eating junk food; he was arguing that the defendant was eating junk food because he was not in his right mind! The fact that the previously health-conscious man was now existing on twinkies and junk food was proof something was very, very wrong. Hmm.

You know, I can really relate to this. When I feel balanced, and grounded, and at peace, I eat well. It's kind of a chicken-egg thing. Do I feel that way because I'm eating well or am I eating well because I am more conscious? Perhaps both.

Don't get me wrong. I love junk food. I'm a reformed crapatarian, and I still indulge in a little crap from time to time, as it keeps me from completely falling off the bandwagon and eating crap all the time.

There are however 3 things I never compromise on: I never eat gluten (because of my autoimmune conditions) and I never eat MSG or nutrasweet. Because of these choices, and my practice of chi gung, I am able to live pain-free with no immune suppressants.

I was very sick- kidney failure, anemia, peripheral neuropathy, congestive heart failure, stroke, migraines, fever, joint pain, pleurisy, etc. So don't think "Oh she just wasn't very sick." I was very sick. I was on 9 drugs and chemo.

I am now on one drug- a half-dose of blood pressure medication. And I believe if I would clean up my diet just a little more and also relax more/ work less/ have more fun, I could be off that one pill as well, and feel even better.

Yes, eating junk food makes you feel good for a short while. I will not deny that I love a sugar high. But I'd rather feel great all day than feel giddy for an hour then crash, and pay for it with my health. Don't be seduced by a twinkie! It's not worth it!

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

Could I have Lupus?

2011-03-18T19:02:00.005-04:00

I recently signed up for Allexperts.com, where I answer questions about lupus from people who write in.
One of the things I am asked repeatedly is "do I have lupus?"

Kind of silly to think I could diagnose them via e mail, especially since I'm not even a doctor, or a nurse, or any kind of medical professional. But the one thing I have above many doctors is this: I'm listening, and I'm taking their problems seriously.

How exasperating to go to the doctor and be told you're imagining your problems, or that you're "just depressed" or something other pat answer implying you're a hypochondriac. Seriously, if I want attention the doctor's office is the last place I'm going. Sit in the waiting room for 2 hours past your appointment time then get 5 minutes with someone who's not even listening... If all I want is attention, I could just make a sex tape.

Getting back to the topic at hand- how to get diagnosed. How to find out once and for all whether you might have lupus. Here are a couple great resources. The LFA lists the classic symptoms of lupus:

The Lupus Foundation

This website discusses the various blood tests (none of which are definitive) used to try to determine whether it's lupus:

My Life Works Today

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com
Next time, I hope to discuss how all diseases are really just one disease, and wellness and illness are a spectrum.

Thoughts on the new lupus drug, Benlysta

2011-03-17T03:54:00.000-04:00

The lupus community is all abuzz over the release of a new drug designed specifically for lupus patients. Not a cure, by any means, but something that *might* help *some* patients reduce their need for steroids.

I voiced my concerns over this drug on my blog when I first heard about it. It is only effective in 42% of patients, which means it is only helping 7% more patients than a placebo (sugar pill). And considering how many times they can run trials and tweak numbers to achieve that result, it's probably no more effective in reality than a sugar pill, and waaaay the heck more expensive. And Lord knows what side effects it has (including death, if you want to call that a "side effect").

If Benlysta's promise is that it can reduce the need for steroids, well, so can lots of other things that are far less ricky and expensive. Like a gluten free diet, acupuncture, massage, eating lots more leafy greens and fruits, juice fasting, yoga. All those things are relatively inexpensive to do, have no risk, and they work.

Big Pharma saves lives, but it also takes lives.You know what's really weird? Lots of drugs actually cause the thing they treat. Prednisone- given to me to stop kidney failure- over the long term can cause kidney failure! Chemotherapy- given, among other things, to treat cancer- can cause cancer!

Thinking we can be restored to wholeness by just popping pills is the kind of stuff that comes from watching Alice in Wonderland too many times. "This one makes you smaller." "This one makes you happy."

How about "This one has limited effectiveness and costs $35,000 a year?"

Thank you, big pharma, for taking lupus seriously and putting our disease on the map so people will take us seriously. We appreciate the effort. If I get deathly ill again, I'll be taking me some prednisone to save my life. But currently I am well, and I got this way through a series of good choices. I think I'll be sticking to my plan of actually building wellness via lifestyle and avoiding drugs unless I'm going into kidney failure.

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

pinkwashing: too much awareness?

2011-03-15T04:19:00.002-04:00

Hot topic today: "pinkwashing."

Do we really need breast cancer "awareness" at this point? Aren't we all pretty much aware by now?

I'm not saying it's not a serious disease- it most certainly is- but the campaign around it with coloring everything pink and being reminded of it at every turn is getting to be too much. Meanwhile, women with breast cancer are still being bankrupted by the illness, and unable to access care. Much like so many other diseases.

And worse, the over-attention to the cancer of one specific body part leaves no understanding or funding for the cancers of all the other body parts.

I wholeheartedly agree with this blogger's assertion that cancer is cancer, regardless of what body part it inhabits. I wish all funds and efforts would go equally to all cancers. I also wish that large portions of the money would go to people who are sick *now* so they can get care and pay their bills while they can't work.

I would take it even one step further and say that serious illness is serious illness. Because I have an autoimmune disease (one that almost killed me), it also get trivialized because it’s not “the big one.”
Excuse me? Kidney failure and a stroke, congestive heart failure and anemia are not serious enough?

I have heard stories of people offering free massages to breast cancers patients getting chemo, but if your cancer was in another body part, you were denied the massage. For breast cancer only.
In my own experience, on a small scale, I felt this same discrimination when I lost my hair (3 times now), I was not eligible to receive a wig from Locks for Love, even though I had had chemo. I had to go buy my own wig, and being as I was broke, I got a cheap itchy $40 nylon wig.

Yes, the women who suffer from breast cancer have a tough fight and many are brave women and admirable survivors. And many women have been lost to this serious disease.
And some of them are tired of being reminded of their cancer every time they go to the store and there's a pink ribbon on everything from tote bags to tictacs.

Also, a number of men and women with other diseases have suffered and died and been trivialized with comments like "at least it's not cancer."
All I'm saying is things are out of balance. And the pink campaign has done such a great job that there's no energy left for any other illness. Suffering is suffering, regardless of the form it takes.

I'm not saying we shouldn't love and care for women with breast cancer. I'm saying we should love and care for everyone, not to have to favor one sufferer over another.

This will never happen, but I wish we could put all the money raised for all diseases into one big pile and use it to help anyone who is seriously ill. I guess I just wish we had universal health care, like every other industrialized nation in the world. None of us should have to stand around like beggars asking people to help us pay our medical bills because we happened to get sick.

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com

GF in SF!

2011-03-11T03:32:00.002-05:00

It seems to be easier to find gluten-free food on the West coast than it is back east. Here in San Francisco, where we are vacationing for a few days, when you ask about gluten-free people don't look at you like you have 3 heads. In fact, they might even start listing their many delicious GF options, as they did in this really cool restaurant a block or 2 from Fisherman's Wharf.

Hot Spud. It's a potato bar- you can put all kinds of salad toppings on your hot potato, or just get a salad (i got both!). By the cash register there are 3 desserts to choose from, *all* of them gluten free. What?! Yes, GF sweet potato cheesecake, GF sweet potato brownie, and rice pudding. Joe got the cheesecake and I had a few forkfuls- delish!

Proving once again that gluten-free does not have to mean flavor-free. I'm stuffed.

Man cannot live on gluten free bread alone

2011-03-01T00:06:00.003-05:00

Gluten. Whatever it is, it sure is tasty, because when you take it out, you find yourself saying "where's the flavor?" And texture? Fuggedaboutit.

I've been eating gluten-free for two and a half years. I'm a lousy cook to begin with- I have literally burned a pot of water, set both the oven and the stove on fire (not on the same day) and ruined jello instant pudding. But adding to my disaster in the kitchen track record the restriction of "no wheat"- and not just no wheat, but nothing with any trace of wheat- well, now we've got a "recipe" for a long string of unappetizing meals.

So I'm always on the lookout for anything that makes GF (gluten-free) cooking easier and TASTIER.

The first time I went gluten-free was 1994. It was suggested to me by a doctor or a healer- I don't remember which- because of my several autoimmune conditions, the scariest of which being lupus (SLE). The lupus was attacking my vital organs, including my kidneys and lungs. The drugs were nasty and I was willing to do anything that might help me get off of them.

Well in 1994, there were not many choices for gluten-free snacks, bread, dough, etc. It was rice cakes, rice cakes, and - oh look, more rice cakes.

I've since learned that rice cakes, while gluten free, are cooked at such a high temperature that they contain toxins. Great. Now I can't even have rice cakes. I WANT MY CARBS!

Man cannot live on bread alone. But woman cannot live without bread. And man does not want to be near woman who is living without bread.

Perhaps that's why I eventually fell off the gluten-free bandwagon. My health was stable, and I was tired of not being able to eat pizza, pasta, sandwiches, pretzels, cookies (there were gluten free cookies on the market, but it was all I could do not to break my teeth on them).

Fast forward to 2008, when I decided again to go gluten free after another lupus crisis, more drugs, more side effects, and more resolve to get back off the drugs.

For a year, all I ate for dinner every night was 2 heads of romaine lettuce with caesar dressing. Once in a while, I'd mix it up and have one head of lettuce for dinner- and the other for lunch. Finally, I got tired of that and started shopping for something else to eat.

Well, bless my lucky stars there are a *lot* more choices out there now, and some of them actually taste *good*.

- Bob's Red Mill homemade wonderful gluten free bread mix
(he also makes a GF pizza dough- it's really good if you have the time to make it)

-don't feel like making bread? me neither. Udi's makes GF bread that tastes and chews like bread.

- Amy's has a bunch of GF frozen entrees, including palak paneer, mexican casserole, rice crust pizza, amy's vegetable bowls, and even GF mac n cheese (she also makes regular mac n cheese, so you gotta read the box!!!)

- pacific foods makes a *fantastic* carrot cashew ginger soup. just heat and serve. YUM!

- there are other frozen entrees popping up that are labeled gluten free- just look in the health food aisle of your grocery store, if there is one. Bob's red mill can be ordered online.

These items are all completely gluten free- and aside from the pizza dough, require no culinary skills whatsoever. Just my speed.

I've learned if you're *really* going to go gluten-free, you have to read labels. You've got to look for any trace of wheat (regular soy sauce has *&^% wheat in it! So I buy Bragg's Amino Acids- soy sauce, no wheat. Things with barley and oats are usually not gluten-free- no "whoppers" candies).

It can be tougher to eat out. Here is a tool that will help you: dining cards with various kinds of foods (indian, mexican, italian, etc) telling you specifically what to avoid in each place:

Is it worth it? For me, yes. I would suggest anyone with an autoimmune disease give it a try for a month. You can try tracking your symptoms and see if they improve. I kind of like not having migraines or joint pain, and fatigue only when I've earned it. It's not going to harm you, so you have nothing to lose but annoying symptoms.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Carla Ulbrich, The Singing Patient, is a comedic performing songwriter and the author of "How Can You *Not* Laugh at a Time Like This?"
http://www.thesingingpatient.com
http://tinyurl.com/348hroc

Feeling Like Myself

2011-02-21T23:21:00.003-05:00

For me, when I'm really sick, all I want is to feel like myself again.

But in 2002, for the second time I found myself at the bottom of the downhill slide to severe illness, sitting there with congestive heart failure, kidney failure, having had a stroke, and unable to get up or down one stair - well, it was going to be a while before I could physically do all the things that the healthy "me" could do. However, because my illness primarily affects my body, and not my mind, I still had my mind to have fun with.

What makes me feel like "me?" For me, most of all, it's being creative. And for me, being creative means writing, singing, making music. So at my lowest point, when I was so sick that it truly frightened all my friends, I found "me" again as I started writing songs about my medical problems. Seems odd that writing about my problems would distract me from them, but it did.

Now keep in mind, I could not play the guitar at that time. My left hand did not work because of the stroke. So, I had to find a way around that limitation. What I ended up doing was taking other people's songs and re-writing the lyrics (parodies) until I could get my hand back. Meanwhile, I got a ukulele, which requires very little hand strength, and I played that as my own sort of self-created physical/ occupational therapy.

What do you like to do that's creative? Poetry? Visual art? Knitting? Blogging? Journaling? Singing? Is there something you love to do that you can still do in some form? How do you express yourself?

Here is one of my creations that, if you also have a chronic illness, I'm sure you can relate to. Sittin' in the Waiting Room:

Finding Support

2011-02-16T02:11:00.007-05:00

When you're feeling lousy, it can be hard to do something like get up and ask for - or even look for- help. I have been there. But I want you to know things can get better.
They don't usually get better all by themselves, though. It does take some work.
And I know it can seem hopeless, and endless at times.

But it really can get a whole lot better. It has for me. I was so sick I had a stroke and kidney failure, congestive heart failure, anemia, the whole 9 yards. I am now married, got my hair back, kept my kidneys (they are functioning normally), got full function of my hand back, and I'm happy.
I work out, teach guitar, wrote a book, I travel, I perform comedy-music shows, I go out and have fun with friends. I can even get an "A" on dance dance revolution. In fact, sometimes I'm doing so well, my lab tests turn up completely normal.

You would never know I had lupus if I weren't sitting here typing about it.

I say all that not to brag, but to let you know there is hope.

But none of us get better all on our own. We all need help, including and especially emotional support.

Not everyone is fortunate enough to have a lupus support group in their town. But there are some other resources.

There are lots of great chat rooms on the web, some of them specific to lupus. I like this one (though I haven't been on it for a while):
http://forum.wehavelupus.com/forum.php

And this one seems quite active:
http://chronicbabeclub.ning.com/

This one has an active lupus section, but also sections for all kinds of other illnesses, and over 94,000 members:
http://www.healingwell.com/lupus/

Of course, meeting face to face is even better, if you're feeling up to leaving the house.
Start with the Lupus Foundation of America (LFA):
http://tinyurl.com/45gzkvq

If there aren't any chapters of the lupus foundation in your area, there may be some meetup groups. Go here and enter your zip code (Some groups cost a few dollars per meetup; some don't): http://meetup.com/

Sometimes there is a support group at your local hospital. Open up your options by attending groups for any autoimmune disease.

Additionally, when you're surfing around on the internet late at night lonely, bored, or in pain, there are a number of lupus blogs out there you can read (including mine) by bloggers who post about their journey. You can read, leave comments, or - if feeling ambitious- start your own blog to vent feelings and ask readers to interact.

This is the lupus foundation's blog, but if you look along the right column, there is a list of links to a bunch of blogs written by lupus patients.
http://lfa-inc.blogspot.com/

This is my blog:
http://lupusandhumor.blogspot.com/

Carla
~~~~~~~~~~~
Carla Ulbrich, The Singing Patient, is the author of "How Can You *Not* Laugh at a Time Like This? Reclaim Your Health with Humor, Creativity and Grit"
http://www.thesingingpatient.com
http://tinyurl.com/4j8qfc4

Being normal is overrated- or is it?

2011-02-12T04:17:00.003-05:00

"I just want to be normal."
There are a few times in life that make us say that
1) being in Junior high school
2) lying around in pain after being diagnosed with something chronic and incurable

Junior high school aside, I never wanted to be normal. Exceptional, yes. Strange and wacky, definitely. Outstanding, indeed. Memorable, talented, funny, smart, anything but normal. Up until I got sick. Then, suddenly, "normal" started looking pretty good.

I recently went through 6 months' worth of PT for tendinitis, and I'm much stronger in my back and arms now. I also did some sessions for my back, because for years I've been crawling up the stairs, as my legs would not support me. Now I am in the kind of shape that most normal people are in when they show up to start a fitness regimen. I've graduated from "remedial" to "normal."

But naturally, once I got back from being "sickly and weak" to "normal," my desire to be exceptional resurfaced, and I am again dissatisfied with being simply "normal."

First I want to tell my friends with chronic illnesses that it is possible to get back to feeling "normal." And if that is your goal, 1) it's attainable and 2) it is a worthy goal, and if you stop at that, I got no problem with it.

Sometimes, you're falling apart so fast you're just trying to not die.
Like, the three times I've gone into kidney failure- my muscles started wasting away, I got so weak I couldn't get up and down the one stair to the outside of the house.
And I gotta say, the hospital is certainly no place to get in any better shape.
How can you regain your strength when they don't want you to leave your bed?
Prisoners have a better shot at getting healthy than hospital patients.
I hobbled into an emergency room once with chronic pain (and kidney failure) and after a week in a hospital bed, I couldn't even stand up without a cane and -no lie- a giant leash around my waist.

Add to that the fact that stress can trigger any illness, and you do have this worry in the back of your mind that if you work out too hard, you're going to end up sick all over again.

Add to that the pain factor (who wants to exert themselves when it hurts enough just sitting around?), and you've got a mess of challenges to overcome.

I have gone from very sick and weak to "normal" 3 times now, and this 3rd time was with the aid of Physical Therapy, but the other 2 times I did it on my own. The first time, I started with walking. I'd set a goal to go just a little further every day, starting with just going to the stop sign and back. When I got up to about 2 miles, I joined a gym, where I used a stationary bicycle (I rode so slowly that it cut off because I guess it thought no one was riding it, but you gotta start somewhere!). Then I joined a bicycle club (I was the slowest one in the club, and was usually riding way behind everyone else- but the key was to measure my progress against what I could do the week or month before, not against what others were doing). As long as I saw progress, I was happy with myself.

The second time I got sick and got better, I was too weak to walk. My legs were blown up with water retention from the congestive heart failure, so instead I got in the pool and held onto the side and kicked. Then I swam. Then I walked.

The third time, I was really weak but I had good insurance and access, so I got a prescription for PT, and I went to a sports medicine place for 6 months. When I "graduated" I got a regimen of exercises to do on my own to stay in shape.

With or without a PT, the idea was the same each time: start really small, deal with the pain issue (heat, ice, massage, whatever works), do exercise that doesn't aggravate the pain (swim, walk, cycle), set *gradually* larger goals, and watch inspiring movies and read inspiring books to keep yourself going. Maybe join a club of some sort for the social aspect, if you can find one where you won't feel left behind by the more fit people. And if you have setbacks, back up a bit and start over. Because in the words of Rocky Balboa, "It's not how many times you fall down, it's how many times you get back up."

And now that I am "normal," I've set my sites higher, and am looking into what I can do next, because I want to have *fun* living inside a body- wouldn't it be great to celebrate living in a body, not just try to tune it out all the time? It's certainly what I did before the illness struck. So what's next? Tap dance lessons? Aerobic dance? Soccer club? My plan this year is to explore some of these until I find something fun. I think that is what a lot of normal people do.

What does being diagnosed with a serious disease mean to you?

2011-01-29T16:51:00.004-05:00

What does being diagnosed with a serious disease mean to you?

This is a really interesting question, and oddly, one no doctor has ever asked me.

Talk about a great open-ended question. If you're at a cocktail party and want to get someone else to handle the bulk of the talking (specifically someone who has been diagnosed with something serious at some point in life), this question will let you off the hook for a good half hour. Come to think of it, I guess that explains why doctors don't ask that question.

So what does it mean to me? At first, it meant an escape from an unhappy life and a fresh start. Then, it meant a choice between either working constantly at being healthy or just giving up and taking drugs and powering through, settling for less than optimal health and not looking my best. Now, finally, it means achieving balance between taking care of myself and taking care of everything else. But I know this now: I have to put myself first, or there won't be any of me to put anywhere else.

read what other lupus patients had to say about this question at the Lupie Log:
http://tinyurl.com/4pbe8e4

Carla Ulbrich, The Singing Patient
_______________________________
Humorous songwriter, Speaker, and Author of "How Can You *Not* Laugh at a Time Like This?" Get the book: http://tinyurl.com/348hroc

hear the songs: http://www.thesingingpatient.com

Believable Affirmations

2011-01-20T19:07:00.006-05:00

Some of you have probably already heard about affirmations.
Many people suggest using affirmations to create change in your life, whether it be improving your health, your relationships, your financial position, your weight, stopping a habit such as smoking, etc.

I remember when I first heard the idea of affirmations. It was in church. We were supposed to "name it and claim it." In other words, you would just declare out loud repeatedly all day long things like "I am incredibly healthy! I have all the riches in the world! I am thin and gorgeous!" The idea being to make statements that represented not where you actually were in life, but where you wanted to be. And that this version of you already existed in the spirit realm, you just needed to claim it for it to manifest in the material world.

OK, that's the idea. Here's the reality, for me, when trying to make statements that are the exact opposite of my everyday reality.
"I am wealthy and have abundance"
My brain mocks me: "You are an idiot. Look at your checking balance."
"I am in perfect health"
My body "Oh yeah? Well, *I* am in pain and I'm not letting you forget it"
My brain chimes in "Yeah and I saw your lab tests"

How do we deal with this committee in our heads?

Let's just look at the definition of affirmation, shall we?
[af-er-mey-shuhn]

–noun

1. the act or an instance of affirming; state of being affirmed.

2.assertion that something exists or is true.

3. something that is affirmed; a statement or proposition that is declared to be true.

4. confirmation or ratification of the truth or validity of a prior judgment, decision, etc.
5. Law. a solemn declaration accepted instead of a statement under oath.

And that is the problem- part of me knows this stuff just is not true. And maybe it's true in a spirit realm, yada-yada-yada, but the rest of me is just too immersed in the real world and my years of experience to the contrary to shout out things that couldn't be less true. All is does, frankly is tick me off and make me feel sorry for myself. And make me want to avoid church because I feel like a failure.

So... here are 2 more (in my mind) reasonable approaches:
1) keep doing this, and when your mind objects, tell it "I know it isn't true yet, but I'm giving you instructions. I'm programming you about how things are going to be in the future.

2) if that doesn't work, try using what I like to call "believable affirmations." These are things that, instead of being 180 degrees off from reality, are instead just a few degrees off.
For example instead of "I am living in total abundance and am wealthy beyond measure" how about "I am still living indoors." "I still can afford groceries" Those things are true, and in some parts of the world, would make me very wealthy. I celebrate the things that are going right, however small, and work my way up to the bigger things. No one goes into the weight room and on their first visit, tries to lift the heaviest weights. (OK, a few guys do, but they're morons). Reasonable people, people setting themselves up for success instead of failure, start small, achieve small successes, build confidence and take a next, slightly bigger step.

I encourage you to start small, but when you find yourself thinking about lack, about things that are bumming you out, and all that you do not have, challenge yourself to say a believable affirmation, even if it's "well I'm not the biggest jerk that ever walked the earth."
Try it. Let me know how it works for you.

Carla Ulbrich, The Singing Patient, is a comedic songwriter and the author of "How Can You *Not* Laugh at a Time Like This," available now at:
amazon.com: http://tinyurl.com/348hroc
http://www.tellmepress.com
http://www.thesingingpatient.com

guest blog: Lupus and filing for Social Security Disability or SSI

2011-01-13T15:33:00.003-05:00

Today we have a guest blog from an expert! Tim Moore, a former medicaid-disability caseworker, sent in this article for the blog on filing for disability when you have lupus (SLE):

Systemic lupus erythematosus (SLE) or simply lupus is evaluated in the immune system section of the Disability Evaluation Under Social Security disability handbook, more commonly known as the blue book. Although there is a specific listing for lupus (SLE) in the Social Security disability handbook (listing 14.02), in a real sense no specific disability criteria has been established for lupus.

Unfortunately, lupus is an exacerbating and remissing autoimmune disorder that attacks different body systems or multiple body systems simultaneously with each exacerbation. Lupus causes a wide range of functional limitations that are dependent upon the body system or organs that have been affected. Consequently, Social Security evaluates the functional limitations imposed by lupus under a variety of other impairments depending upon which body system or systems are affected.

Functional limitations caused by lupus are evaluated under other impairment listing sections that address impairments of the following body systems: joints, muscles, ocular, respiratory, cardiovascular, digestive, renal, hematological, skin, neurological, or brain (mental). This simply means that to be approved for Social Security disability benefits for lupus an individual must meet the criteria established for the body system affected by lupus. For example, an individual with neurological involvement must meet the criteria contained within the neurological listing.

If an individual does not meet the criteria established for their particular manifestation of lupus symptoms, they still may be able to receive Social Security disability if the following is true:

A) Their lupus condition involves two body systems or organs to a lesser extent, and at least one of the body systems or organs is affected by an impairment that is at least moderately severe.

B) The individual is experiencing severe documented constitutional symptoms and signs such as weight loss, joint pain and stiffness, fever, extreme tiredness, or malaise.

Immune system disorders are covered in section 14.00, which has two parts, A and B, that elaborate on just how Social Security evaluates various immune system disorders.

Part A of the immune system section states that the impairment listed in Section 14.00 must involve some sort of deficiency of one or more parts of the immune system, and the listing goes on to list various cell types and antibodies that may be involved.

Part B of the immune system section states that irregularities in the immune system may cause the development of connective tissue disorders. Generally, connective tissue disorders are chronic multiple body system disorders, which vary in manifestation, course, and prognosis. Connective tissue disorders generally cause a loss in body function and often require long term care that involves frequent medical evaluation and treatment.

Since we know what a connective tissue disorder is, we can take a look at what type of documentation Social Security requires for a medical determination.

Social Security uses medical history, lab studies, medical imaging (x-ray, MRI, CT scans, etc.), and even biopsies to establish the existence, duration, and severity of an individual’s lupus condition. If an individual does not have enough medical information, Social Security may purchase non-invasive tests such as imaging or blood work to evaluate an individual’s condition (however they never purchase test that are considered risky or invasive i.e. angiograms or biopsies).

In addition to this type of medical documentation, Social Security requires a longitudinal treatment record of at least three months in order to establish that an active impairment exists in spite of prescribed treatment and that the condition is expected to last twelve months or more.

Why a twelve month period? If possible, Social Security uses a twelve month period to establish the severity and duration of an individual’s lupus. Social Security must also establish that the limitations imposed by lupus prevent an individual from performing substantial gainful work activity.

Individuals with lupus most often do not meet the requirements of a listing; however many may be awarded benefits based upon a medical vocational allowance.

Due to the nature of autoimmune disorders such as lupus, many claimants benefit from medical vocational allowances simply because Social Security considers an individual’s age, education, functional limitations, and work skills when making a medical disability determination on a claim.

The author of this article is Tim Moore, a former medicaid-disability caseworker and a former disability claims examiner for the social security administration's DDS, or disability determination services. Tim Moore is the publisher of The Social Security and Disability Resource Center.

rated PG 13?

2011-01-11T23:02:00.007-05:00

OK I admit it. I'm a wimp.
These days I can barely sit through a PG 13 movie without getting freaked out by the violence. It's a weird double-standard, too. I mean, show a naked boobie and it's rated R. Show someone stabbing a naked boobie? Oh, that's OK. Rated PG.
What on earth are we teaching our kids- and society?

I don't have any kids, but I need to protect my own psyche!
I have literally run out of the theater because the movie was so violent it freaked me out. Once, a friend brought me to a movie called "mimic"- science fiction, about genetic engineering, he said. "Oh it sounds smart." It was about COCKROACHES! I looked at him about halfway through and said "Are you enjoying this?" He goes "YEAH!" "Well," i said, "meet you in the lobby."

Thankfully, there are some resources out there now where you can find out ahead of time what you're in for at the movies before you go. Like Movie Mom:
Check here before going to the movies for warnings on violence, etc.:
http://blog.beliefnet.com/moviemom/

interesting blog

2011-01-10T15:13:00.003-05:00

Great article on the power of food to heal (or harm) and how some who advocate natural healing are persecuted for it
http://activerain.com/blogsview/564454/Cancer-Doctors-hospitals-would

working out

2011-01-09T15:14:00.004-05:00

Really happy to have finally made it into the zone where pushing myself when i'm working out does not mean a setback in my health.

That's a really tough balance when you are struggling with autoimmune diseases- figuring out how hard to push yourself when you're exercising. You want to make progress with your fitness, but if you push too hard, you'll end up flat on your back not only *not* exercising, but not doing much of anything.

Been there, done that, and thanks to 6 months in physical therapy rehabbing my weakened shoulders and back (due to tendinitis and the poor posture I was holding in defense against the pain) and my weak back/ legs (due to inactivity, which was due to the chronic pain from the tendinitis).... well, those 6 months of work have paid off and I am able to push myself and do challenging workouts, just like all those other "earth people" out there who have never had to deal with the challenges of chronic pain and an easily perturbed immune system.

I can't give *all* the credit to PT; I also have changed my diet a lot (gluten free, no artificial sweeteners or MSG, and in general eating a lot more fruits and veggies, no meat and very little dairy). And I take some herbs that were recommended to me by the health counselor at the wellness boutique. They help my energy and my sleep.

I also started drinking nopalea, something I saw on a tv commercial (!) that is supposed ot reduce imflammation. I'll post about that later this week.

Meantime I'm enjoying having muscles that are sore from a good workout. I can enjoy that sort of pain :)
3 cheers for PT!

If you're thinking of getting some PT (and I highly recommend it, especially if you've been injured or laid up for a while), and you're willing to do the exercises at home on the days you don't have appointments... definitely ask around to your neighbors, support group, facebook friends, family, for a recommendation for a great PT facility near you. I went to one that is a sport medicine facility, and it's really inspiring to be surrounded by athletes getting back on their feet.

graduated from PT to... PT?

2011-01-08T00:25:00.005-05:00

Today, after almost 6 months of regular visits 2-3 times a week, every week, I graduated from PT! PT being physical therapy. It's one of the few things my health insurance pays for that actual seems to make me healthier. Usually things that help me long term, I have to pay for out of pocket. Drugs that eat your bones and cause fatal brain infections? sure, we'll pay for that. Radioactive dye injected into your veins? Let me get my wallet. Suck the marrow out of your bones? Who do a make out the check to? Massage, acupuncture, vitamins, herbs- are you kidding? You're on your own.

PT somehow made its way into the hearts of the "unsurance" companies, and for that I am grateful. I had tendinitis in my right arm that would flare up and cause other muscles to compensate, creating a chain reaction of misuse of posture, muscles, etc. I just chalked the whole thing up to fibromyalgia or lupus. But when it was just one shoulder over and over I started to think something weird was up, so I got an Xray, then an MRI, adn they found- wait a tumor?! So I was getting that tumor dealt with and the doctor off-handedly mentioned the tendinitis in my arm and I said HOLD THE PHONE! Now I know why my arm and shoulder hurt all the time.

Funny how when something like a tumor or kidney failure are in the picture, stuff like tendinitis gets pushed aside when it otherwise would have been treated immediately.

I actually asked my rheumatologist for a prescription for PT after talking to a neighbor who is a physical therapist. She recommended a really high caliber facility that also is only 10 minutes away by car.

so, here I am today, having "graduated," being completely out of pain and fully functional, no longer need to crawl up the stairs due to weak legs, no longer taking all kinds of pain pills and anti-inflammatories, no longer too uncomfortable to sleep. After cleaning up my diet, getting off all but one drug (the BP med, which has now been cut in half) and getting some regular acupuncture for a while, becoming pain-free was the last piece of the puzzle in getting back to feeling good.

I'm so inspired that I'm going to go back once a month- for personal training! to get in shape! Yes, I'm going from PT to... PT.

I even got a couple parting gifts from the facility. Though I'm tempted to say, "I did 6 months of PT, paid $1000 out of pocket, and all I got was this lousy tote bag and a t-shirt," well frankly being pain-free is such a huge gift I just can't make such a joke. And anyway, I like the tote bag.

My book is featured in the NJ star ledger today

2011-01-02T14:09:00.002-05:00

Hope you don't mind if I brag a bit. I've been working on this book for the last 2 years, a collection of humorous essays about dealing with chronic illness and coming out on top. It comes out Feb. 1, 2011, but is available for pre-order now on amazon.com.

http://www.nj.com/entertainment/arts/index.ssf/2011/01/five_books_to_make_you_laugh.html

eating out gluten free

2010-12-12T23:43:00.004-05:00

I used to believe that if i just didn't eat wheat, I was gluten free. Then I found out i needed to avoid oats, barley and rye. Anyhow a lot of breads that say "rye" are wheat plus rye. Then I started finding out how many places wheat and gluten are hidden- soy sauce, shampoo (!), envelope glue, sauces, whipped cream, oy! Here I was having given up so many foods I love (pizza, pasta, cake, sandwiches) and I was still eating gluten and not even knowing it. That made me really mad! Then, of course I adjusted.

Eating out has been challenging, but I have found a few places near me that have great salad bars (stick to oil and vinegar dressing to be sure you're not getting hidden gluten), no croutons, no crackers. One chain I have found that is extremely gluten-free friendly is Uno's. They have a gluten-free menu that includes, among other things, PIZZA! It still has cheese, and people, we shouldn't be eating tons of cheese, but as an occasional treat, once every couple months, it keeps me from falling off the wagon after watching everyone around me eat whatever they please all day long.

I think if you join their page on facebook you can get some coupons, sometimes really good ones like buy one get one free entree.
http://www.facebook.com/#!/UnoChicagoGrill

Gluten free book

2010-12-11T21:05:00.003-05:00

Recently got a copy of G-free Diet by Elizabeth Hasselbeck. I'm not a big fan of her in particular, but it's a great book, really explaining what gluten is, the difference between celiac disease and gluten intolerance, and all the places it hides (including the glue on envelopes! Maybe that's what poisoned George Castanza's fiancee on that episode of Seinfeld...).

If you've got an autoimmune disease, it's worth trying a gluten free diet for a few weeks to see if your symptoms subside. I've been gluten free for over 2 years and I'm doing well. I'm not on any immune suppressants, my kidneys are back to normal, no pleurisy (water on lungs), no joint pain or fevers. Gluten free is only one of the things i'm doing, but it is the one that takes the most vigilance.

This is a great book, easy to read and thorough.

Enter today to win a copy of my book!

2010-12-08T00:20:00.002-05:00

Oopsy! i should have posted this sooner, so I hope you see this today!
Enter today to win a copy of my upcoming book, How Can You *Not* Laugh at a Time Like This?

1 more day to enter! Win a copy of How Can You NOT Laugh at a Time Like This? http://bit.ly/fNo2RB

Are you a big diet soda drinker?

2010-12-06T03:22:00.001-05:00

Great article on the dangers of nutrasweet (a.k.a. Equal, aminosweet, aspartame):
http://www.libertynewsonline.com/article_301_29757.php

Games on facebook do not create awareness. IMO.

2010-11-30T00:13:00.004-05:00

OK, here we go, a really hot button topic. Breast cancer awareness.
Someone on facebook sent this to me and a bunch of her other female friends:

"Someone has proposed that us, GIRLS, did something special in Facebook to help gain consciousness of Breast Cancer. Its so easy that I'd like you to join us to make it spread! Last year it was about writing the colour of the bra you were wearing in your FB status... and it left men wondering for days why did the girls have colours (apparently random) in our status. This year it has to do with our love relationships, in other words, for the moment you are going through with your relationships. What do you drink?

tequila: I'm a single woman
rum:= I'm a touch and go woman
champagne:= I'm an engaged woman
redbull:= I'm a woman in a relationship
beer:= I'm a married woman
vodka:= I'm the "other one"
sprite:= I'm a woman that can't find the right man
whiskey:= I'm a single woman but with friends that won't stop partying
liquor:= I'm a woman that wishes she was single.
gin;= I'm a woman that wants to get married

Now all you need to do is write down the answer for your situation in your FB status (don't reply this email, just put it in your status). Also, cut and paste this message and send it to all your girl-friends as a message. The Bra game reached the news. Let's make this one make it too and see how powerful women"

to which i respond:
i don't drink alcohol but i'm not single... so, seltzer.

FWIW i think breast cancer has plenty of awareness. I don't know a soul who is not aware of the existence and seriousness of breast cancer.

what breast cancer and all cancer needs, IMO, and what *all* diseases need, is for the funds to go to sick people who can't pay their bills, rather than all of it going for research that may not benefit anyone for 50 years. my 2 cents. It will probably make some people mad, but as someone who has survived brushes with death 3 times now, I think my opinion is worth at least 2 cents.

to which someone responds to me:
"Breast cancer has, for a long time, carried a stigma with it; it was the unspoken cancer because women were embarrased, ashamed. October has been named Breast Cancer Awareness month to help women be aware of their risks and not be so afraid to ask their doctors, family, and friends about the disease. Many, many women don't even know that they should have routine mammograms and numerous lives could be saved it they just knew. Carla, you must be very fortunate to know such women because research proves differently. So adding a simple word to my status is such an easy way to raise awareness and I am more than happy to participate. Just MY 2 cents. My I never have the unfortunate experience to know someone that has to fight breast cancer and may I never have to fight the disease myself. May they continue their painstaking research to find a cure to this disease. "

to which I responded:
We have a lot of cancer in my family. I lost an aunt to brain cancer. My father has to pee through a tube because of bladder cancer. My cousin has a brain tumor that he lives with. Another aunt had a spot removed from her lung. And I have a tumor on my arm. I also live with 4 autoimmune diseases, one of which has almost killed me three times with kidney failure, congestive heart failure and a stroke.

If I thought posting an alcoholic drink in my status would do anything to change any of these facts (even though they are not breast cancer, but actually other cancers and other diseases), I would put it every day, even though I can't drink alcohol.

As someone who was literally bankrupted by illness, I only wish that more effort were given towards helping sick people pay their bills right now. Once in a while there is an organization that focuses on just that. i recently performed for dance for the cure- I took a day off work and donated my performance, as I have done on a number of occasions for support groups for lupus and fibromyalgia. *All* the money from the dance for the cure event goes towards helping families of people with breast cancer. I am not at all unsympathetic. When there is an opportunity to make a real difference, I pitch in.

And FWIW there are lots of diseases out there, many of them life threatening, not just cancer and not just cancer of the breast. but for whatever reason, all the attention and money goes towards one particular disease, and almost entirely towards research. if we had universal health care i'd be OK with that, but even those with insurance are bankrupted by serious illnesses.

I am not saying don't look for a cure, or don't care. Quite the opposite. I am saying don't overlook the actual suffering people while looking for a cure.

Note that I didn't even bother to address the fact that this message was sent on Nov. 27, almost a full month after the end of October, breast cancer awareness month. I also didn't mention that if you really want to create awareness, stupid drinking and bra games trivialize and sexualize a serious illness and is just a form of slack-anthropy, a way to pretend you are helping out without actually doing anything meaningful. If you want to help prevent cancer with your facebook status, then tell everyone to eat 9 servings of fruits and vegetables a day, as recommended by the American Cancer Society. That is what I did not say, and should have. So I'm saying it now. I am not playing bra games, or drinking games, or where do you leave your purse games for cancer, or lupus, or any other disease. But I care. I blog. I sing. I perform at events, sometimes for benefits at my own expense. I donate when my friends run marathons for MS and cancer. I even stood in the rain to watch one of them complete a marathon for leukemia. I donate my "junk" to the lupus foundation pickup service. Play drinking games on facebook for fun. But don't lie to yourself and think it's creating awareness, and don't criticize me for not participating.

Comments welcome, as always.

The Apathy of loved ones

2010-11-28T16:28:00.002-05:00

Just found the lupus magazine, an online magazine with some great articles.
This one article on The apathy of loved ones really resonated with me. I think I know at least one person in every single category. As infuriating as it is, it's nice to know I'm not the only one who's dealt with these appalling behaviors.
http://www.thelupusmagazine.com/y-kim-nault.html

Love Simple (Movie)

2010-11-26T02:32:00.004-05:00

I just finished watching Love Simple, an indie film about an unusual love story: 2 twenty-something people in Brooklyn, NY who fall in love with each other, but then lie to each other about their lives because they are both afraid no one will accept them is they see their circumstances. Totally plausible, and something I can relate to firsthand.

Her secret, the important bit of info she is afraid to reveal to anyone she might be romantically interested in, is her diagnosis of lupus. He is also keeping secrets, but that's about all I want to reveal of the plot, because I hate it when people spoil movies.

Good acting, good casting, nice writing, nice music, and really great job of addressing these questions: exactly when do you tell someone you have a chronic illness? If you tell them the minute you meet them, they will always see you through the lens of illness. They may never get to know you at all, or well. I, for one, would rather people know me first, then find out about the illness second. But then, when do you spring this bit of info on them? The first time you meet them? 2nd? 3rd? If you wait too long, you feel like you're living a lie. When you've got a chronic illness and you're in your 20s and single, this is a biggie. You don't want to be alone, but you don't want to be a burden.

This movie may not depict exactly how tough it can be physically to live with lupus (Where is the exhaustion? Where is the joint pain? Where is the kidney failure? Where are the prednisone side effects- weight gain, moon face, and hair loss? Perhaps for the sake of keeping the movie viewable, these common problems are not addressed.)... But, it does a really nice job of addressing a lot of the emotional stuff that comes with it: people close to you abandoning you, wishing you could just be normal, wondering if you can find love- and keep it, not wanting to ruin someone else's life so you can have love.

Lupus is a disease that desperately needs more awareness, and this film is a big step in a really good direction towards getting people to realize this is a real disease, but behind the disease is a real human being, still very much worth taking the time to get to know.

Love Simple is a nice mix of humor and poignancy, one that makes you think, and it has heart, like all good indie films. Definitely worth seeing. I recommend it. It might even spark some interesting conversation afterwards with whoever you see it with.

Click here for info on how/ where to see it (at the moment, it is only available on itunes as a rental but will soon be more widely available. Portions of the proceeds of this movie go to the Alliance for lupus research):

http://www.lovesimplethemovie.com/

Benlysta

2010-11-18T18:48:00.003-05:00

Big week in the news for lupus, it seems!
Benlysta, the drug created specifically for lupus, has been recommended by the panel for approval (not yet approved, but recommended).
If you've been reading my posts, you know I'm not a fan of drugs as a permanent solution to chronic illness. Taking pills indefinitely can cause as many problems as it solves. However, there are times when the disease is running so rampant that you absolutely must intervene with something, or it will kill you or cause permanent damage to your organs. And it is refreshing to see that someone out there is trying to find us something better than prednisone for those times.
So here is the announcement:
http://www.youtube.com/watch?v=gz6u4ethB6o

Toni Braxton has lupus

2010-11-18T16:48:00.005-05:00

One would hope that the announcement that Toni Braxton has lupus would help bring some much-needed attention and compassion for the disease. Instead, below we get comments like this (note: Toni Braxton filed for bankruptcy with debts of $50 million- admittedly, a sum I cannot fathom, but a separate issue altogether from illness):

"No, Toni Braxton I am not giving you my hard earned money to get you out of debt. No matter how many stars you bring out or variety acts you have. Instead of shopping sprees how about going to the doctor? Lupus is NOT cancer. You can treat your symptoms and if you take care of yourself, you can live. Bet that girl from the Lion King wished she had Braxton's money. But she's dead now, from cancer not lupus."

No, lupus is not cancer. And cancer is not lupus. And cancer, for god's sake is not the only disease that deserves to be taken seriously! Why are we even bring cancer into the discussion? I'm afraid the cancer people (breast in particular) have done such a great job getting people to care about their disease that there is no compassion left for any other diseases. Infuriating.

It would be nice if one of the online articles covering Toni's lupus announcement would either tell the whole story of the bankruptcy or leave it out, because it is completely clouding the issue of lupus awareness. It is making her announcement entirely ineffective.

In case you didn't believe me...

2010-11-17T23:00:00.002-05:00

... when I said I would do *anything* to get better.
Just when you think you've done it all: acupuncture, bodytalk, lympahtic massage, regular massage, physical therapy, chelation therapy, biological dentistry, craniosacral therapy, psychotherapy, bioelectronic feedback, coffee enemas, gluten-free diet, vegan diet, candida diet, no artificial sweeteners, journalling, career change... I am nothing if not willing! And most of it has made a difference.

I just had my rheumatologist appointment Monday. I was pleased to see my blood pressure is back to its old self, 90/60, with the meds, so i'm hoping now I can look towards getting off the meds. We're cutting the dose from 60mg to 30mg, and I will monitor my BP daily to make sure it stays in the normal range.

So that's great news, but what I was really annoyed by was hte fact that my inflammation (sed rate) is even higher than it was last time. it's at 84 now, which is extremely high. It's been as high as 120, but when it's that high I'm in constant pain, all over my body. Normal range is below 20. I'm on a gluten-free vegan diet now, and no MSG or artificial sweeteners, so I don't think it's my diet. It's probably my brain/ emotions/ level of stress causing me to produce too much cortisol, increasing my inflammation. SInce those things are habits that I will need help breaking (I'm working on that; reading a book about it. I will post all about that when I finish it). .. Anyway, the only quick and relatively easy (simple anyway, if not easy) radical change I can make is to go on a liquid fast for a week. I feel I really need to give my body a rest from digestion. I've got high quality allergen-free vegan food powder and rice milk. I'll keep you posted.

Gluten-free does not have to mean flavor-free

2010-11-11T18:13:00.003-05:00

Well, it was so nice today, I decided to eat lunch outside.
Actually, there were 2 reasons I ate outside.
1) it was nice out
2) I was getting new tires on my car and I can't stand sitting in the waiting room smelling all that rubber. It's so offensive to my senses, it must be bad for you. I used to go to a bluegrass jam session in a bicycle shop back home, and it reeked so bad of rubber I thought my sinuses were going to burst into flames. I try to be aware of what I am exposing myself to. Which brings me back to my "picnic."

I had my little beach chair, a book, and my lunch.
I've been gluten-free for a couple years now and I must confess that at first, I was not very creative with the whole gluten-free thing. I would get rice cakes, rice crackers, rice bread, and slap some hummus on them. I really like hummus, but nearly every day? Besides, that is awfully carb-heavy, all those crackers and breads. Lately, I've been making smoothies with fresh fruit, rice milk and wheatgrass powder. (even though it says "wheat"-grass, it is gluten free. confusing, but true). Packed with nutrients and fiber, and easy to digest.

Today, since I was "picnicking" I went back to hummus for the afternoon, because it is so portable. I brought some vegetable chips (beet chips, yam chips, carrot chips), a little hummus, and a couple dolmas (stuffed grape leaves), and some homemade iced green tea with stevia. Quite nice.

What book was I reading? How nice of you to ask. I'm reading The Superstress Solution, a really great book about minimizing/ undoing stressful habits, written by an MD. I checked it out from the library after getting booked for a gig where they want me to include a message about dealing with stress. I quickly realized I was fairly unqualified to talk about dealing with stress effectively! So I'm studying up. Since I have no wisdom of my own to share, I'll just read a bunch of books, add some humor, and pass along other people's wisdom.

Now what kind of tasty gluten free dinner shall I have?

-Carla Ulbrich, The Singing Patient, is a comical singer-songwriter and author of "How Can You *Not* Laugh at a Time Like This?: Reclaim Your Health with Humor, Creativity and Grit," coming out Feb. 1, 2011. www.thesingingpatient.com

Movie features lead character with lupus

2010-11-01T15:30:00.001-04:00

ROMANTIC COMEDY LOVE SIMPLE TO DONATE 10% OF DVD PROCEEDS TO LUPUS RESEARCH INSTITUTE

Film Lands International Distribution Deal With Synergetic
NEW YORK, NY, November 1, 2010 – Your Indie Films/Synergetic Distribution has acquired worldwide distribution rights for the film Love Simple, directed by Mark von Sternberg. The film will be available for purchase internationally on Tuesday, November 9, and 10% of the proceeds of the film will benefit the world renowned Lupus Research Institute.

The DVD version of the film will be made available through several worldwide online venues including: amazon.com, bn.com (Barnes and Noble), target.com, bestbuy.com and walmart.com.

Hailed by Variety as an “engaging neighborhood pic...with genuine flair and wit,” Love Simple is a coming-of-age romance where the lead character Seta falls in love after meeting, Adam (Francisco Solorzano) in a Brooklyn Laundromat; however, both must deal with lies and personal situations in order for their relationship to survive -- he lives at home caring for his sick father, and she has suffered from lupus her entire life.

“It made sense for us to help shine a light on lupus and raise funds for this vital organization, particularly in this year that saw lupus frequently in the news with Lady Gaga announcing a borderline diagnosis, and the heart-warming story of Snoop Dog’s daughter’s battle with the disease,” states von Sternberg. “Based on the overwhelming response we’ve received from the lupus community, the film accurately shows the often misunderstood symptoms and issues associated with lupus.”

In addition to Variety, the film has received glowing reviews from nearly a dozen lupus and chronic illness bloggers (see below), and will be featured as the lead story in the November issue of The Lupus Magazine, an online, world-wide publication for the lupus community.

“Based on the positive buzz the film has generated so far, pre-sales of the film have been strong,” said Robert Rangel, of Your Indie Films/Synergetic. “We look forward to working with the Love Simple team on helping spread the word about this wonderful film, and its efforts on raising awareness and funds for lupus research.”

The Lupus Research Institute (LRI) is the world’s leading private supporter of innovative research in lupus, and champions scientific, creativity and risk-taking in the hunt for solutions to this autoimmune disease. The LRI’s research strategy and results are changing the course of lupus research and bringing new hope to people with lupus around the world.

For more information about the film, visit www.lovesimplethemovie.com, or become a fan on Facebook at www.facebook/lovesimplemovie. For more information about the Lupus Research Institute visit www.lupusresearchinstitute.org. For more information about Your Indie Films/Synergetic Distribution visit www.synergeticdistribution.com.

Reviews of the film "Love Simple":

"An engaging neighborhood pic, with genuine flair and wit. The obstacles along the central duo's rocky road to coupledom are untraditionally somber: She has lupus, he's stuck at home caring for his wheelchair-bound father." Variety

"Definitely recommended...a great film helping a great foundation." Geoff Thomas, editor, The Lupus Magazine

“The inspiring and engaging film is a realistic portrayal of a lupus patient, and will serve as an invaluable way for us to raise awareness of a disease that is a leading cause of heart attack, kidney disease, and stroke among young women.” Margaret G. Dowd, Executive Director, S.L.E. Lupus Foundation.

"This movie is sorely needed. Love Simple is a huge gift, not only for Lupus sufferers but for their families and friends, and the world. Beautifully filmed, it is the first easily accessible media piece that I have seen to actually bring real awareness to Lupus." Julia Sherred, editor, www.geekypleasures.com

"A movie whose female lead has lupus - which may be the first of its kind! Check out their website. And spread the word!" www.despitelupus.com

"I think it is very relatable for many people. It deals a lot with dating, relationships, and family difficulties that can come with Lupus. I thought it was pretty accurate in its portrayal of Lupus." www.cureforlupus.org

"I just…watched the movie "Love Simple"... I loved it...It's definitely a great lupie movie." www.livinglupie.com

"I absolutely loved the film!" Matthew Sapp, editor, mattandlupus.blogspot.com

"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor, lupuseveryday.blogspot.com
###

Celiac and lupus

2010-10-28T23:06:00.003-04:00

have you ever thought of getting tested for celiac disease?
I'm going to ask my rheumatologist to add that to my blood tests next time I see him.
what is interesting about celiac is that it can lead to other autoimmune diseases. it would explain some things, certainly for me.
And by some things i mean my life for the last 18 years.
i mean if i have celiac, then i know my problems are caused almost entirely by diet, and not by some other crazy ideas like bad karma, sin, luck or even genetics, which no one has ever been able to prove.

Celiac Disease is diagnosed via blood tests, a physical exam, and an endoscopy/ biopsy. I'm not crazy about that last part, as it means being sedated, running a thingy down my throat and getting 8-12 samples snipped out of my small intestine. The ONLY reason I would consider doing it is to finally once and for all know what started this whole mess.

Celiac disease is treated by avoiding gluten (mainly wheat, which hides in many products) and for some people, also diary. That means giving up a lot of tasty food, but you know, I'm willing to do that if it means I never have anemia, pleurisy, faitgue, kidney failure, congestive heart failure, stroke, hair loss, depression, neuropathy, migraines, swollen legs/ ankles/ feet, and oh yeah,
prednisone, cellcept, cytoxan, attivan, paxil, clonodine, nifedical, norvasc... yeah, I'll swap eating pizza for getting my life back. There is more to my life than eating junk food! Or at least there will be once i'm fully healed.

Fibro relief

2010-10-22T17:16:00.003-04:00

At this point, I no longer have fibromyalgia symptoms and haven't for a while.
I attribute that to... well, not any one thing because I'm usually doing more than one thing to improve my heath, and it usually takes more than one thing to do just that.
In my case, I (finally!) gave up diet soda and anything else with nutrasweet in it, and went on a gluten free diet, both about 2 years ago. Since then I also resumed acupuncture, have done chi gung, sometimes more consistently than others, and I walk 30-50 minutes a day, 6 days a week.
I haven't had symptoms in a long time, aside from unrelated tendinitis in my right shoulder. That i am dealing with via physical therapy.
However, a friend of mine just got diagnosed with fibro so I was giving her some advice and was looking for some links on the web so she could do a little reading, and I found this great site with lots of good info all in one place. So I figured hey I'll share with on my blog. Not uncommon for people with lupus to also suffer from fibro. Here ya go:
http://www.basic-keys-to-natural-health.com/all-natural-cure.html

One last note- If i want my fibro to recur, all I have to do is go jogging. Why, I don't know, but that is my experience.

Well wishes!

Clinical Trails

2010-10-18T14:57:00.004-04:00

There are a bunch of new clinical trials for lupus.
Some are for drugs, some for stem cell transplants.

Go here
http://www.clinicalconnection.com/SearchStudies.aspx

where it says "keywords" type in "lupus"
then click the "search" button

There are currently 4 studies shown in their database, but look below that and click the red link that says "Show results from other databases" and a whole bunch more will pop up, including all the stem cell studies.

cycles

2010-10-08T15:58:00.004-04:00

So here's something I've been mulling over for a very long time: vicious cycles. And whatever the opposite of that is- heathy cycles?
When I'm in pain, I can't sleep. And when I can't sleep, it runs me down and I'm in more pain. Here I am, the person who needs sleep the most and I can't get any. How do I break this cycle? It has to be interrupted with something like ice, heat, massage, acupuncture, pain pills, death... The last option works, but it kind of misses the point of getting rid of pain, which is to me, to get back to my life. The problem with pain pills (and most pills) is that if you never get to the bottom of what is causing the pain and eliminate the problem, then you become dependent on the pills. But I digress. This post is supposed to be about cycles. So let's look at another cycle.

Let's say something really bums you out. Like you lose your job. It's much easier to find a job when you have a job, because you believe you are hire-able, desirable, kinda of like in high school when you tell your friend you like a boy and now all of a sudden she wants to go out with him. ( I really should have told that so-called best friend I had a crush on some dirtbag just to see if she would go after him, too. But I digress, again). So now you can't get a job because you don't have a job. The person who has a job is getting lots of offers, but the one who needs a job the most can't get one. How do we break this cycle? Volunteer work? Internships? retraining? more school? Affirmations? I don't know- something has to interrupt this cycle.

This happens in personal relationships as well. Like say someone doesn't help with housework, so the other person decides to stop cleaning and start hoarding junk in the garage. Then they get into a sort of Mexican standoff and neither one will change until the other does. It can get so bad that the only hope is to call the TV show CLean House and have them rescue them form their own behavior and broadcast their insanity for all the world to see.

When we are sick and in pain it can be hard to keep a sunny outlook. Chronic pain can really drag you down. Sleep deprivation can drag you down at least as fast. The double whammy of the two can make you forget how to laugh or even smile. But it is so important that we find a way to send positive vibes through our body, because unhappiness creates disease.

Something has to come along and cause a "pattern interrupt."
A good laugh, a fun activity, some affirmations, a massage (a bunch of massages...), playing with a dog, making a collage... What do you do to create positivity in your life?

Totally sold on PT

2010-09-06T14:46:00.003-04:00

For those of you who follow my blog, you know I've been dealing with chronic pain in my upper body for 18 years. I (and my doctors) blamed it on lupus and fibromyalgia. But then all the other pain went away (after I changed my diet, got acupuncture, and did qigong daily). And the pain in my right shoulder remained, and it was driving me crazy, keeping me up all night, and so relentless that no pain medication of any kind worked on it any longer- not advil, not aleve, not heating pads, not icy hot, not even vicodin or percocet. Not even 2 percocet at once. So, finally, I went to the urgent care clinic and tried to get a diagnosis. An MRI and 2 XRays later, we now know I have a tumor in my arm, which is probably benign (we're watching it for the next year or so), but the real problem is tendonitis and an impingement, both of which have responded really well to physical therapy. PT was my idea, by the way, not my doctor's. I had to ask for a prescription, but thankfully, he was happy to write a Rx and it has worked like a charm. I have been pain-free for about 4 weeks- I haven't taken anything at all for pain.

A couple words of advice on PT- like doctors, they are not all the same. Ask around to your friends for a good, effective PT, and see if you can get into a sports medicine clinic. Those folks are completely focused on getting you back to doing what you were doing before.

Well wishes and happy trails.
Carla
http://www.thesingingpatient.com

radioactive

2010-08-16T01:32:00.002-04:00

Well, that was an adventure. I went in to the cancer center for the radioactive isotope test Friday.
I really don't like going to the cancer center. If my doctor wasn't so nice, I'd just stop going. It's a seriously difficult place to be. And I gotta say I feel really weird being the healthiest person in the place (not counting employees).

Right now, I'm feeling pretty good- thanks to PT, I'm pain-free and no pain meds for 2 weeks. I even recently managed to (at last) wean off my sleep med, after 4 years of taking it. So now all I'm taking is 1 blood pressure med, 2 herbs, and a multivitamin. Thanks to my gluten free mostly vegan diet, my hair and skin are healthier. And I don't weigh myself, but I seem to be a size smaller than I was last year. Maybe even 2 sizes. I'd like to stay feeling well. It never seems to last long. I'm doing everything in my power to get and stay healthy, and I don't want a setback.

So you can imagine that when walking the halls of the cancer center past people on stretchers that look like they are on their last gasps, I'm really hoping to not need the treatment that they're getting. I can't help feeling quite a bit of anxiety every time I walk in that place.

We had to wait 3 hours after the injection of radioactive isotope before I could get the test. So I decided to live out one of my odd little fantasies: I always wanted to take a nap in central Park. Because NY City is so freaking hectic, I just wondered what it would be like to be right in the middle of the most insane city on earth, and take a nap. I brought a blanket, and Joe and I did just that. (bucket list: check){note: if this is your fantasy too, I strongly suggest not doing this alone- and choose a heavily populated area and maybe wrap your purse strap around your leg }

Now back to the cancer hospital, where I nearly had a panic attack when they brought that bone scanner camera down to about 2 inches from my face and left it there running for 10 minutes. That and I knew I was getting exposed to radiation. Which, ironically, causes cancer. The whole test took about an hour. That's a lot of radiating.

A hour later, see the doctor, still can't make a definitive diagnosis- my tumor defies easy categorization, so we're going to xray it semi-regularly to make sure it's not growing. OK, fine.

Now I've spent the entire day getting this test and waiting for answers that didn't come, so I'm in dire need of comfort food. I remember a classmate from a creative writing class who said he had a restaurant in NYC that served nothing but mac and cheese- including gluten-free mac and cheese. Now if mac and cheese isn't comfort food i don't know what is. Couldn't remember the name of it, so i called a friend who looked it up online (no i don't have an iphone- i can't use that annoying screen to type). S'mac! That's the name of it. And yeah it was YUM, although my stomach was confused by the sudden bombardment of cheese. Next time I'll get the vegan gluten free mac and cheese- yes they have vegan too! The I asked if they had gluten free cookies and they said no, but there's a GF bakery on the next block!!! So we went I and had 3 miniature GF cupcakes! My Italian husband was so delighted to see me overeating...

PT

2010-07-31T01:25:00.004-04:00

my latest adventure in healthcare: i'm getting physical therapy.
For the chronic pain in my upper body. The pain meds don't work anymore, and the pain has been keeping me up at night and driving me batty.
It seems I have overworked the front of my torso with guitar playing and swimming and typing, and totally not used my back and shoulders.
My evaluation was illuminating- they could just about literally push my arm down with a feather. No strength at all.
So, we're working on strengthening the back/ shoulder muscles.
I get heat (ahh), a brief massage (ahh), then she pushes on my spine (ugh!), then we get to exercising, then ice.
word to the wise: all PTs, like all doctors, are not the same. I asked a neighbor who is a PhD in PT, where I should go, and she sent me to a sport medicine facility. these folks were great diagnosticians and their goal is to get you back to doing the things you love- not to tell you that you just have to live with the pain and limit activity.
A cool little apparatus I came home with: the backnobber. You can basically massage yourself with this thing, get those knots out of your upper body. Very cool for me, because my back recreates those things pretty quickly after they are rubbed away.

So far, I am seeing improvement, and at this point, that's enough to keep me going back.

New Clinical Trials for lupus

2010-07-21T00:39:00.001-04:00

Hey y'all
There are several new clinical trials open for people with lupus.
I don't' know anything about them, except that you need to be diagnosed with lupus and live near the clinic (birmingham, AL, Indianapolis, or Phoenix).
Have a look.
http://www.clinicalconnection.com/SearchStudies.aspx

My arm is fine (mostly)

2010-07-11T01:44:00.003-04:00

Well, I learned a new word yesterday: enchondroma.
This is a kind of tumor when part of your bone turns back into cartilidge. Apparently, bones start out this way in the first place. So, unless this thing becomes cancerous (only some of them do) or much larger (I'm in that "not quite a problem but almost" zone), we won't be doing anything but monitoring it. No surgery, no chemo (phew! I don't have to lose my hair again!).

I will, however be getting one more test just to try and get a little more info: a radioactive isotope test. Yes, they're shooting radioactive dye into my veins. Then I have to wait 3 hours while it works its way through my system and then i lie around for 45 minutes while they scan me. I'm pretty good at lying around, having had much experience, but I'll keep practicing just to be sure. One more adventure in health care. And I get to hang out at Sloan Kettering in New York City, the creme de la creme of hospitals. Even the robes are nice. And the doctor was great. I'm telling you, I'm never going back to my old cruddy system of just grabbing the first guy out of the phone book. If you must go to a doctor- and if you have a chronic illness, you must- wow, referrals are so important.

Meanwhile we haven't figured out what's causing the pain in my arm, as it may not be the enchondroma but possibly one of my various autoimmune conditions. We're complicated creatures, we autoimmuners, and we can be very tricky to treat. If it's not the enchondroma, then perhaps it's the chronic inflammation. Just guessing.

'Til next blog post,
Be well, all. and thanks for all the well wishes.

referrals only from now on!

2010-06-06T21:19:00.006-04:00

I had a really unpleasant experience Friday morning with an orthopedist. He asked for my history so I told him i had lupus and his immediate reaction was "who told you you had lupus?" "about 20 different doctors over about 18 years." Then he goes on to tell me he doesn't believe that diagnosis until he runs his own test or talks to my rheumatoloist. Then he wants to know if I had an internist, a cardiologist, etc. I say "no, I get tired of going to appointments and they're running redundant tests, so I just go to one doctor. I used to have all those specialists but I don't feel I need that many doctors." I guess in his mind, if i don't have about 10 doctors, I must not have lupus. Now look, I don't *want* to have lupus. I wish I didn't have lupus. I hope one day I don't have lupus. And now I'm sitting here having to defend this diagnosis to this jerk, when I didn't even go in there about lupus in the first place. I just want to know what this thing is on my friggin' arm. Is it a tumor? A mass? a Cyst? Why are we having this conversation???

But I can't let this go, so I convince him I have lupus by telling him the details of my most recent labs: postive ANA, double stranded DNA, high sed rate, nephritis. I tell him I've been on prednisone for over a year at 3 different occasions.OK, now he believes me. But now he has to scare the crap out of me by telling me how common it is for people who've taken prednisone to end up having hip necrosis (bone death in the hips). Gee thanks, that's really helpful. (How'd you like some face necrosis?) And so relevant to the conversation about whether or not i have cancer in my arm. Oh and if I ever have hip necrosis, I should come back and see him. Not no but hell no.

Now that we've sat through 2 excruciating opening acts, can we get on with the main attraction, the whole point of my being here? The test results, please. Well, it's a tumor, he says, delivered with the same dispassionate tone of voice you'd use to tell someone that the telephone bill just arrived.

Now he wants me to get this isotope test to determine whether it's benign (or not). I express concern- aren't they going to shoot radioactive dye into me. His response (and I quote) "so what?" So my grandmother died from an iodine test, that's so what. I have a history of kidney failure, and shooting poisonous crap into my veins is risky, that's so what.

Well the good news is, he is not qualified to work on tumors, so I never have to see or talk to him again. I have to go to an orthopedic oncologist. He referred me to one, but it occurred to me that anyone who's a friend of his might share his bedside manner, so I decided instead to save myself further insult to my existing injury, and possibly further injury as well. I suspect if they killed me or accidentally lopped off my arm they'd still send me a bill and say "so what?"

Lucky for us we have a friend in the area who is a really good doctor and a decent person, so we called him and got a referral to a different ortho oncologist. I'm not going to any more doctors without a referral from someone who knows them. And if they don't like it, "so what?"

In the future, I'd love to be able to take the "Who told you you have lupus" as a compliment to my appearance rather than an insult to my intelligence. I am glad don't look sick right now. But I don't like defending my diagnosis. Do doctors do this with other diseases? "Who told you you have cancer? Who says you have MS?" I don't know, maybe they do. But there's got to be a better way to present such a question.

taking requests

2010-06-02T21:37:00.002-04:00

OK my fellow autoimmune sufferers.I am now taking requests!
what topics would you like me to attempt to write about in my next batch of humorous songs?
So far I've written about prednisone, the 24-hour pee in a jug test, the hospital from hell, doctors' waiting rooms, finding a good phlebotomist, losing too much weight and having no butt, and having to poop a lot.
send your suggestions!
carlau AT mindspring.com

there is only one disease

2010-05-24T02:02:00.005-04:00

I'm reading a really mind-blowing book called "Never Be Sick Again."
It somehow manages to confirm everything I ever suspected about the origins of disease, the shortfall of modern medicine, the destructiveness of the American lifestyle, and the resilience of the human body, as well as the possibilities of becoming completely well, despite what we've been told about chronic illness.
Unfortunately, it's going to involve giving up junk food and eating a lot of vegetables. I'm already doing that, but it's going to involve even more changes than I've already made. I already knew that sugar, nutrasweet (and other artificial sweeteners), dairy, white flour (and for me, all wheat), meat were off the list for me and for the most part I've made peace with all that.
But rice cakes? wow, it never even occurred to me that rice cakes were unhealthy. Oh well.

But back to the bottom line of this book: there is only one disease, and that disease is (drumroll); cellular malfunction.
And there are only 2 causes of this one disease: nutritional deficiency and toxicity.
There are 6 pathways back to health: nutrition, toxicity (lack thereof), psychological (a powerful one), physical, genetic (advice here is mostly to avoid harming your DNA), medical (the advice on this one being avoid medical intervention as much as possible).

We blame so much on genetics. But we are not pre-programmed to self-destruct. The good news is (now that we've heard the bad news: most of what we eat and love is bad for us, much of it having a net negative nutritional effect on our cells)--- we can make changes and positively, even drastically affect our health and no longer live in fear of getting sick and old and incapacitated and dependent on others, including a heartless soulless medical system that inflicts as much harm as it does help. OK I may be adding a little of my own opinion in here along with the synopsis, but not much...

There is so much confusing information out there about health and diet. This one book cuts through all the BS. It is incredible to hear about the isolated cultures who are free from processed foods and are so healthy they live to 120 and beyond, doing vigorous folk dances and fathering children to the day they die, which happens peacefully in their sleep. They are so healthy they don't even have words for things like dementia. They don't even get colds. Until the paved roads come in, and along with them the processed foods.

In general, when he's asked to give advice for one dietary change, he tells most people to cut out dairy. I mean really, what other species would walk up to another animal of a completely different species and start drinking its milk? Cows are kinda gross when you think about it. And for those of us with autoimmune issues, cutting out all gluten products. We've heard that one before, haven't we? I've been gluten free for a year and a half, off the diet soda for 2 years and 95% meat and dairy free for about 6 months. I am mostly sugar-free as well. It does help. I've even dropped a size in clothing. I refuse to step on the scale, because I don't want to make this about weight and vanity; this is about health and a permanent lifestyle change, the pursuit of health, vitality, freedom, reaching my true potential, being energized, feeling great. Looking great is an awesome bonus.

The subtitle is Health is a Choice. Learn How to Choose It.

Empowering. Promising. I'm about halfway through, still reading, but I'm sold on this one.

massively humerus

2010-05-05T00:13:00.008-04:00

OK well after all this wondering what all my shoulder pain is about, we have something of an answer. We've all been guessing at what it might be. If you're looking for a frozen shoulder to cry on, you'll have to look somewhere else. My shoulder is not frozen. i have a mass on my arm. The humerus, to be exact. The funny bone. the one that runs from your elbow to your shoulder. The only funny thing about this is what runs through the mind when you finally get a diagnosis for something you've been suffering with for years: "a HA! it's real! i told you so! Oh crap! it's real! is it going to kill me?"

A mass. that sounds so... massive. What does it mean? a mass of what? So of course I can't get any kind of game plan or more specific diagnosis until I go to an orthopedic guy/ gal. Sign. I hate limbo. I don't even like to do the limbo. But I can't go to the doctor anytime in the next couple days. I do guitar lessons and performances. I can't just cancel those unless i'm nearly dead. So I have to just get through the next few days then see if I can get into the specialist.

First the MRI. Then the XRays. Backwards, I know. Next I may have to get a catscan. What's the difference between a catscan and an MRI? Is the clanking sound more annoying? My right arm is getting so many pictures of it, it's starting to feel like Lindsay Lohan. If I don't look out it's going to start running around drunk to dance clubs with no panties on and buying designer clothes. And my left arm is getting a complex. "Hey I'm cute! Someone take a picture of me! How come the bad arm gets all the attention?"

I'm so tired of doctor appointments. where's my *&^* lollipop?

My theory is that it's arthritis caused by guitar playing. Or too many wise cracks, trying too hard to be massively humerus.

update: June 4. Geez it's a whole month later and all I've managed to do is get to the orthopedic guy (who was a jerk) and all I got from him is it's a tumor. Now I gotta go to an orthopedic oncologist. And maybe get some radioactive crap shot into me for yet another test. And/ or biopsy. Meanwhile thanks to acupuncture and massage, I am no longer in any pain. I still have yet to get my lollipop though.

not enough germs

2010-04-16T16:16:00.004-04:00

So there's this new theory floating around amongst microbiologists about the cause of autoimmune disease (and allergies): we are overly hygienic. We're too clean. We don't have enough germs and parasites living in our body, so we are out of balance. It's an interesting theory, and I will certainly entertain the idea (although I'm not about to swallow a pound of tapeworms).

The part I disagree with is *why* we have an imbalance. Autoimmune diseases are most rampant in "developed" (a.k.a industrialized, or Westernized) countries. The microbiologists posit that what those countries all have in common is lots of hand washing, caution about germs,etc. and they think that's the issue: Kids don't play in the dirt enough, we wash our hands too often, etc.

Let me just say- I ate plenty of dirt as a kid. I played in a sandbox (where the cat sometimes pooped). We had recess at school twice a day, and no one washed their hands after. We shared a water fountain through my senior year. As soon as we got home, our parents sent us outside to play. I went to summer camp where we used a latrine. I am sure I ran into *plenty* of germs. And my mom was not hysterical about wiping them off me. And yet, I've still got not one, but 4 autoimmune conditions.

However, I will still entertain the idea that I don't have enough parasites, or microorganisms in my system because I also had *plenty* of exposure to antibiotics. And that is what I think is causing the imbalance, not soap.

Sadly, doctors were, at least in 1992, when i first got sick with lupus (but didn't yet have a diagnosis), indiscriminately giving out antibiotics, and i had 4 rounds of them in a row while they were trying to figure out what was wrong with me- and every single batch of them made me sicker. Full body rashes, vomiting, and escalation of the lupus.

I've taken them for bronchitis a bunch of times, I took them when I got my wisdom teeth cut out. I think it's pretty safe to say I've taken antibiotics between 12 and 20 times in my life, and I'm probably not unusual in that respect.

So if you're looking for a culprit, look past the bar of soap, which I will continue to use (though not antibacterial soap, just plain old normal burt's bees chemical-free soap- because I don't want e coli, thanks!), and look in the medicine cabinet.

Yes, antibiotics save lives, but there's such a thing as too much of a good thing.
Now, tell us how to rebalance our systems. will probiotics do the trick, or do we need something more gross?
Can I just go back to the playground?

PS would someone please study the connection between allergies and autoimmunity? Please?

Psychosomatic, Real, or both?

2010-04-14T03:59:00.003-04:00

well, here's a loaded topic. Psychosomatic illness.
It's amazing to me that emotional problems can cause physical ailments. Frankly, I don't think we've studied this enough.
I was listening to the radio on the way home from work today, something I rarely do, so I think perhaps I was supposed to be listening. You know, divine guidance.

The program was "The World, " a news show on NPR featuring international news, and they were discussing the health problems plaguing the people of Haiti. Now that the initial wave of injuries caused directly by the earthquake has subsided, the hospitals are seeing large numbers of people with unexplainable conditions- things with no discernible physical cause, like itching, and even a woman with partial paralysis. The doctors are saying on this program that many of these people are suffering from psychosomatic illness- physical problems caused by unexpressed emotions.

No patient wants to hear that they are causing their own illness, or that they are imagining their symptoms, or that it's all in their head, or even that it's psychosomatic, so this is a delicate issue. How do you treat someone who is suffering from physical symptoms, when you the doctor know that the root cause is emotional trauma? They are saying these people need talk therapy, but I'm saying initially, how do you even get them to agree to that if you don't first agree with them that their physical pain is real? In my mind, this is the perfect place to use a placebo. If the power of the mind is causing their problems, let the power of the mind also help them get better- distract them, and then also strongly urge them to get talk therapy so they can get at the root of their problem.

Now, once you've opened this Pandora's box, you really have to ask- doesn't nearly every ailment have an emotional component to it? 18 years ago, after watching one of my friends refuse to grieve, then die of a tumor wrapped around his heart, I realized even cancer can be psychosomatic. Doesn't mean it wasn't real. It as so real it freaking killed him. But what I mean by psychosomatic is emotionally-related. Whoever said emotions won't kill you... I disagree. maybe not this second, but they can eventually kill you.

So, after having very real symptoms that can be measured by blood tests, MRIs, and all that, and getting diagnosed with 4 different autoimmune diseases, and nearly dying of kidney failure three times now, I feel like, OK, they know it's not in my head. But what *is* in my head?

I'm really at this point willing to entertain that some or even possibly all the root of my autoimmune problem is between my ears, that my mind is powerful enough to create kidney failure, anemia, joint pain, fever, you name it. Because if I can create it, then I can STOP creating it. So I'm totally willing to explore the idea that maybe it *is* psychosomatic. And what I mean by that, again, is not that I'm imagining it, but that maybe i'm creating illness, or creating an environment in which illness can take over, by the thought patterns and emotions that I allow to habitually occupy my being.

Feelings are real. Feelings are powerful. Feelings can be destructive. They can also be healing and creative.

I recently got involved in co-counseling, a somewhat obscure movement wherein people counsel each other as peers. There are guidelines and workshops, its' not a free-for-all, and generally it's anonymous; you don't socialize with the people you see in these groups. The idea is to release your pent-up feelings and to break old patterns of feeling, thinking, and behaving.

I heard about this movement via an obscure self-published book called "healing lupus" by waverly evans. She claims to be completely cured of lupus through co-counseling, since 1978. that's a pretty long time to be symptom-free, and she was *really* sick. Same disease as me, just as sick, now symptom-free. Frankly, I think I'd be pretty foolish to not look into what she did and give it a try. So I'm doing it, once a week, and I feel really good about it so far. And the weekly groups cost nothing. My favorite price. It also goes by the name reevaluation counseling, in case you want to google and look for a group in your area.

OK, friends, time to sign off for now. I'm still struggling with insomnia, and have now watched every single episode of Law and Order: Criminal intent, seasons 1-7 via netflix. there aren't any more L&O episodes of any kind available for instant play on netflix, so now I'm watching... Columbo.

Thanks for reading. Hope you enjoyed this controversial topic! Chime in!

raw paleo diet cures lupus? discuss!

2010-03-29T04:39:00.006-04:00

http://www.myhealthblog.org/2010/03/26/lupus-treatment-success-rate-100-via-paleo-diet-in-france/

This guy says we should all be eating all raw, including raw meat (ew!)
I totally agree that diet has an incredible impact on health, and that we should avoid dairy and processed food.
I've even heard you should avoid the nightshade family of food (tomatoes, potatoes, peppers, eggplants), and i don't eat these foods much at all. They all give me heartburn anyway.
After I learned what margarine was made for- to fatten up turkeys- I gave that up as well. Anything buttery that won't melt? gross.
Eating loads of fresh veggies and fruit? I think everyone agrees with this, even our government, and they're not exactly cutting edge with nutrition.
I'm not so sure i'm ready to give up rice or nuts and seeds, but I will entertain the idea.

And this I know: I darn sure am not eating raw meat.
That just doesn't make sense to me, because I read elsewhere that 100% of lupus patients have low stomach acid. How are we supposed to digest it? And secondly, raw meat is filled with pathogens, and we have suppressed immunity; how are we supposed to fight off things like salmonella- and worms? ew, ew, EW!!!

All the same I am pleased to see someone doing some research on the impact of diet on lupus, because it is something we can control it's not drugs, and it is an affordable cure.
As for my feelings on raw meat?
Well, feel free to disagree.
In fact, discuss.

note: rebuttal article:
http://www.scientificamerican.com/article.cfm?id=evolving-bigger-brains-th

why i refuse to step on the scale

2010-03-25T17:55:00.011-04:00

OK, seriously?
There's now a $160 scale that will tweet your weight. Meaning, you step on the scale and it posts your weight on twitter.com for the whole world to see.

No way am I stepping on that scale, or any other scale. Because stepping on the scale and looking at the number, not to mention broadcasting that number, sets off a cycle of obsession and compulsion in me that I can't control. Being female, and American, I am, as required, obsessed with my weight and size. And, as required, I judge and value myself by how big or small I am and how good or bad I look.

The messed up thing is when you're dealing with a chronic illness, you often don't have control over your looks or your size. So now on top of judging yourself for your inability to work full-time, or to do basic things like keep your house clean, or enjoy simple things like going to parties or taking a nice long walk, I get the added bonus of judging myself for how I look and what I weigh when the illness and drugs have drained the color out of my face, made my hair fall out, given me a rash and zits, and made me puff up like a balloon with water retention.

So, no, I'm not getting on the scale. Because somehow, I can magically eat nothing and gain 5 pounds.

Everyone says, when they decide to lose weight (and let's talk about that terminology, shall we? How can "losing" something be good? Let's call it "decluttering." I'm going to declutter my thighs!... ) What was I saying? Oh yes, everyone says they're losing weight for their health. If you're really losing weight for your health, then you should be looking for permanent changes to your diet. What we often see, thanks in part to shows lie the biggest loser, celebrity fit club, bride boot camp, etc., is people making radical changes, eating food they don't like, feeling deprived and hungry for the entire time, doing workouts they despise and ultimately looking forward to the day they can go back to sitting in the la-z-boy eating whatever they like. That is not helping your health. It's not just being overweight that is tough on your body. Losing weight is tough on your system- all that fat getting jogged loose, running through your veins and kidneys- and gaining weight is also hard on your body. In fact, that's what kills most anorexics- their heart fails as they put the weight back *on*. Same with those who have been in concentration camps; they have to be eased back into eating full meals. So, we can't just jerk our bodies around, living irresponsibly most of the time then going on extreme diets here and there to "atone." We have to find something we can live with, period.

In high school, I counted calories. I didn't need to. I was a size 5. I marched witha tuba and did aerobics records- for fun. In college, I gained about 10 pounds, so I went on a slim-fast diet. 2 shakes and 1 meal a day. a couple years later, the same 10 pounds (I guess technically it was a new 10 pounds, built from a new set of calories, but on the scale it was the same number), I went on weight watchers. I was always hungry, but it worked. Once I developed lupus, all bets were off. I lost weight for no reason, without trying, and at first I didn't mind. I'd never been too thin before. Then again, I'd never had kidney failure before, and i'd never been too weak to get out of a chair on my own. Then I went on prednisone and gained 40 pounds in teh first month. Talk about demoralizing! Obviously we all know fat does not equal health. But clearly, thin does not necessarily equal health either. (Do I need to repeat that?) So what equals health? It's not a number, and that is why I am not using the scale.

Health equals vitality. Health equals joy, energy, being able to pursue your dreams, wholeness, wellness, peace, well-being.

According to the world health organization:
"Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."
See, not even a single mention of weight.

Since developing the illness, the scale does not correctly reflect whether or not I've eaten properly. It doesn't factor in my water retention from kidney issues or drug side effects. it doesn't play by the rules. It doesn't tell the whole story. And it sets off my neuroses, and makes me want to starve myself and do intense exercise, both of which will only make me worse off than if i'd never stepped onto the scale. (Is it any coincidence that the US population has scales everywhere you look and probably more fat people than any other country? I don't think all those scales are helping!)

I do not measure my well-being by a scale.

Does this mean I just gave up and decided to be fat? Hell no! I've just decided this is not a tool that is helpful for me, because my weight fluctuates wildly during the week (well to me 3-5 pounds when you're 5 ' 2" is wildly), and it is more discouraging than helpful.

Instead, I have committed to lifestyle changes that I am working to make both permanent and pleasant. I trust myself enough now not to binge on foods that I shouldn't be eating. I eat what I should be eating to nourish myself- a vegan diet (no wheat, dairy, sugar, meat), and that number will take care of itself, as will all my other numbers. I get blood tests. I go to both the MD and the acupuncturist. If I'm getting worse, they will notice. But I'm not. I'm getting better, and everyone is noticing. I really am doing this for my health.

Since giving up the scale and going vegan, I've tightened my belt 2 notches. Weight loss- excuse me, de-cluttering- is just a bonus, because what i really want is to feel great, to be well, to have energy, and to enjoy healthy food, to find healthy food that I can eat and enjoy for the rest of my life. And there, I've made great strides.

So, no thanks, I'll pass on the fancy scale, and on reading people's weight tweets. Until they come up with a scale that measures my spiritual well-being, I'm way more interested in reading tweets about making tofu tasty.

making friends with fruits and veggies

2010-03-21T22:32:00.002-04:00

so, over the years the various health practitioners I've been to- acupuncturists, osteopaths, etc- have all encouraged me to eat better. And every book I've read recently on *really* getting better from autoimmune disease (not just taking drugs, suffering side effects, then taking even more drugs, then replacing your bones after the drugs eat them) insists that we eat a vegan diet if we want to feel better.

At various times in life since being diagnosed, I've eaten really really well, and then for some reason, probably because I'm surrounded by temptation, I fall off the wagon and go back to my evil ways. And probably not coincidentally, i eventually end up very ill again, with anemia, failing kidneys, lung trouble, migraines, fibromyalgia attacks, exhaustion, etc. You really have to ask yourself: is this diet soda really that tasty that it's worth kidney failure? and chronic pain? Of course, it would probably be easier to resist the diet soda if I started hurting the minute I drank it. but that's not how it works, is it?

Folks in the world of alternative medicine refer to how we eat as the " Standard American Diet" as in SAD. very sad indeed. And although I am grateful to our politicians for attempting to correct the injustices in our health care system, unless we also address the way we eat, we are still going to have a health crisis. I guess we have 2 crises: an insurance crisis and a health crisis.

But the fact is, junk food is delicious, and I love it.
And I was addicted to it. And if you ever want to see how hard it is for an addict to give up a habit, even though it is ruining their life, tune in to "intervention" on A&E, or celebrity rehab, or sober house, or addicted. it doesn't matter if it's heroin, crack, alcohol, or potato chips, and it doesn't matter if you have more money than God. If you're addicted to something, it's a tough row to hoe kicking the habit. It has taken me a lifetime to finally stop drinking diet soda, and I know I could easily end up right back to drinking it under the right (or rather wrong) circumstances. But for now, I want to feel well and vibrant more than I want a diet coke.

In rehab, there are things they can do to make you more comfortable while you're going through withdrawal. for alcoholics, they give them phenylbarbitol. For me, I had regular coca-cola, then stepped down to green tea with stevia, and the occasional seltzer, so i still get my fizz on.

I switched from potato chips to low sodium organic blue corn chips, and now only have them a couple times a week.
I switched from ice cream to rice dream, dairy free "ice cream." And eventually I didn't really crave that either, because it doesn't have that opiate effect that dairy does, that keeps you addicted (and inflamed).

I went from wheat to gluten-free bread. It's not a squishy and tasty, except when I make it in the bread machine from the Bob's red mill mix, in which case it's better than any loaf of store-bought bread you'll ever find.

When people who never really ate much junk food write books about how we should all eat nothing but fruits and veggies I often find it - ahem- hard to swallow. But trust me up until I got sick, I thought a bean burrito at taco bell or a tuna sandwich at subway were health foods.

If a junk food junkie like me can learn to eat better, there's hope for any junk food junkie.

I just had a delicious plate of real food that my old friend's mom introduced me to. it's easy and it's so dang good you won't believe your mouth:

7-8 strawberries, cut up
1/2 small container of blueberries
small container of soy or coconut milk yogurt
about a dozen ground-up or chopped almonds

(You'll need a coffee bean grinder for ground up almonds)
coat the fruit in yogurt, pour the almonds over the top. YUM!

Even my husband liked it, and he's like Mikey: "he wont' eat it- he hates everything!"

lupus survey from Lupus Alliance

2010-03-21T03:58:00.004-04:00

New survey from the Lupus Alliance of America up for people with lupus, or parents of children with lupus:
http://studentvoice.com/liu/lupusallianceamericasurvey

It seems to be targeted towards figuring out how they can help us deal with work, life, etc.
38 questions, takes less than a half hour, worth doing.

supplements without fillers

2010-03-15T23:38:00.003-04:00

The latest addition to my collection of daily "stuff " i'm taking is MSM.
I started taking MSM, which I bought in pill form at the drug store, a month or 2 ago after reading "curing your lupus naturally" (an e book). Then I read elswhere that it was really important ot get *pure* MSM, because MSM is a detoxifier; it absorbs toxins. So if the MSM you buy is not pure, it's going to be saturated with the fillers that are used with it.
So I went on the hunt for a place where i could get MSM that had nothing but MSM in it.
http://www.worldimagenaturals.com/

Its a powder, and can i say it tastes disgusting, like I might imagine liquified prednisone to taste, but at least MSM doesn't make me bloat, stay up all night and go into raging scream fits.

And here's my favorite thing about MSM: it kills yeast!! yay! (prednisone proliferates yeast).

I also went toa more pure form of DHEA. I was buying pill form of that, and heard it was far less effective, perhaps not effective at all. And I have since used the DHEA to squelch sudden pains like a jammed toe. Surprisngly effective.

Nutshell: worth the extra $ to get the best form of supplements and herbs.

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