Wednesday, March 30, 2011

My encounter with Richard Simmons!

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! )

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

Saturday, March 26, 2011

Nutrasweet hiding in regular food

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

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...

Thursday, March 24, 2011

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

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:

I mean seriously, how bad for you is junk food when you can use a junk food diet as evidence in a legal defense?
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

Friday, March 18, 2011

Could I have Lupus?

I recently signed up for, 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
Next time, I hope to discuss how all diseases are really just one disease, and wellness and illness are a spectrum.

Thursday, March 17, 2011

Thoughts on the new lupus drug, Benlysta

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

Tuesday, March 15, 2011

pinkwashing: too much awareness?

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

Friday, March 11, 2011

GF in SF!

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.

Tuesday, March 1, 2011

Man cannot live on gluten free bread alone

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?"