Sunday, December 12, 2010

eating out gluten free

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.!/UnoChicagoGrill

Saturday, December 11, 2010

Gluten free book

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.

Wednesday, December 8, 2010

Enter today to win a copy of my book!

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?

Monday, December 6, 2010

Are you a big diet soda drinker?

Great article on the dangers of nutrasweet (a.k.a. Equal, aminosweet, aspartame):

Tuesday, November 30, 2010

Games on facebook do not create awareness. IMO.

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.

Sunday, November 28, 2010

The Apathy of loved ones

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.

Friday, November 26, 2010

Love Simple (Movie)

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):

Thursday, November 18, 2010


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:

Toni Braxton has lupus

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.

Wednesday, November 17, 2010

In case you didn't believe me...

... 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.

Thursday, November 11, 2010

Gluten-free does not have to mean flavor-free

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.

Monday, November 1, 2010

Movie features lead character with lupus


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:, (Barnes and Noble),, and

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

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,

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

"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."

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

"I absolutely loved the film!" Matthew Sapp, editor,

"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor,

Thursday, October 28, 2010

Celiac and lupus

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.

Friday, October 22, 2010

Fibro relief

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:

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!

Monday, October 18, 2010

Clinical Trails

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

Go here

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.

Friday, October 8, 2010


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?

Monday, September 6, 2010

Totally sold on PT

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.

Monday, August 16, 2010


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...

Saturday, July 31, 2010


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.

Wednesday, July 21, 2010

New Clinical Trials for lupus

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.

Sunday, July 11, 2010

My arm is fine (mostly)

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.

Sunday, June 6, 2010

referrals only from now on!

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.

Wednesday, June 2, 2010

taking requests

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

Monday, May 24, 2010

there is only one disease

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.

Wednesday, May 5, 2010

massively humerus

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.

Friday, April 16, 2010

not enough germs

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?

Wednesday, April 14, 2010

Psychosomatic, Real, or both?

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!

Monday, March 29, 2010

raw paleo diet cures lupus? discuss!

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:

Well wishes to you all-

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"

Thursday, March 25, 2010

why i refuse to step on the scale

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 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.

Sunday, March 21, 2010

making friends with fruits and veggies

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

New survey from the Lupus Alliance of America up for people with lupus, or parents of children with lupus:

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.

Monday, March 15, 2010

supplements without fillers

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.

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.

Sunday, March 14, 2010

tips for folks with fibro

here's a fantastic article loaded with tips on alternative treatments (alternative to drugs) for fibromyalgia:

Natural news has a free e newsletter which I believe comes daily. Full of great tips on all sorts of things related to living and eating well.

Thursday, March 11, 2010

Keeping an Open Mind

I really hate living in a neighborhood with an HOA (Home Owners' Association). I look forward to the day when we can sell this stupid place and get out from under the $300/ month fees we pay, which are used for half-million dollar unnecessary paving projects and annoying landscapers who use leafblowers every tuesday from 7am to 4pm, and random jackhammer projects also starting at the crack of dawn. Then, when I have a valid concern, such as the fact that my gutters drain into my driveway instead of the garden, turning my driveway into a sheet of ice every time it snows/ melts/ refreezes (which was pretty much 3 solid months this year), and I bring it up, the answer, before I even finish stating the problem is "NO, we can't change it, can't afford it, can't change things from the original plans, don't even bother asking, not gonna happen."

Every time I go to the car it's a serious challenge not to fall and break my neck. And what would a project like re-routing gutters from the driveway to the garden on the front side of one unit cost? A helluva lot less than a half million dollar paving project, which, by the way, no one in the community wanted, except the people on the board and the lawyers who shouted us down in the meeting. I will never go to another homeowners' meeting again, because they are not interested in the voices of the homeowners. It was so one-sided, us against them, the people who actually own the homes being shouted down by the board who supposedly represents us, and the lawyer and management company who are paid for by our fees, that the entire group of homeowners, during this meeting were muttering about moving out. If we all could have sold our homes right there on the spot, there would have been a mass exodus. But we are all powerless, and they know it.

What has this got to do with anything? It's exactly like being a patient in the so-called health "care" system. We pay tons of money and instead of getting cared for, we are abused, ignored, not listened to, and when we have valid concerns, they are often not addressed. (I realize there are a few good doctors out there, but I'm talking about the general experience, the majority of what's going on out there). And just like the stupid HOA, there is nowhere else to go. It's not like you can choose to not be sick and poof, you're not, anymore than I can just unload my house (like everyone else, we can't sell until and unless it goes back up- WAY back up in value. we're trapped, just like anyone with a chronic illness).

I'm rambling, and that's because I'm really mad.
But bottom line what makes me mad about both health care and the stupid HOA, who can kiss my septic tank (i'm not letting them near my butt- I don't trust them!), is that these people are PROBLEM-FOCUSED! They refuse to even look for solutions. I have a problem, they say too bad, stuff it. But when it's their problem, every bit of everyone's resources goes towards dealing with it- without even thinking maybe there's a cheaper way to deal with this, so there's some resources left over when someone else has issues that need to be addressed. everything goes toa few, nothing to everyone else, despite the fact that everyone contributes. Both the HOA and health care.

Concrete example from health care: chelation therapy. Cheaper, by 10-fold, and far far safer than open-heart surgery. Chelation therapy removes plaque from arteries by a safe IV drip treatment given about 2 times a week, for about 20-40 treatments. cost, around $5000. No one dies from chelation therapy. No one. Heart surgery is $50,000 plus. The death rate for open-heart surgery are 2-5%. If the death rate for chelation therapy was that high, it would be shut down. Meanwhile, cardiologists get chelation therapy for themselves, but refuse to tell their patients about it.

The only way out of these corrupt, unjust systems is to not participate. And in order to do that, you have to take charge, be solution oriented, think beyond the obvious worn-out solutions, (not all diseases are caused by genetics are viruses, and drugs are surgeries are not the only solutions; not only that, they are not very good solutions in most cases- come on research people, use your brains! If the Easter egg wasn't behind the tree the last 10 times you looked, maybe it's time to look somewhere else! Of course, if drug companies are funding the research, the research is only going to be on drugs. Until the broccoli foundation starts funding some trials, we're not going to learn about the effects of diet on well-being. No real money to be made in broccoli, it seems).

Unlike some people who shall remain nameless (and faceless, and obnoxious and in control of the homeowners' association), in order to deal with my problems, whether they be my household or my health, my first reflex is not to throw a ton of money at the problem. In most cases, you can't buy solutions to your problems. You ask other people how they dealt with it, or a similar problem. You picture what a solution would look like. You educate yourself. You try things, even when people call you crazy. You keep trying things. You keep what works, and ditch what doesn't. You surround yourself with people who believe there is hope. You never give up, and you never accept "there is no answer" as an answer. That wasn't acceptable in 8th grade algebra, and it's not acceptable now.

One day I will escape the tyranny of the HOA, and I will never look back, lest I too turn into a pillar of bureaucratic BS. And one day, too, I will escape the tyranny of lupus, fibro, and all the other related syndromes that have attached themselves to what should be my well-being. I will be happy, I will be whole, I will be free. Mark my words. I am looking for and working towards solutions every day. I will not be oppressed!

keep looking

Thought for the day:
"Never must the physician say, the disease is incurable. By that admission he denies God,
our Creator; he doubts Nature with her profuseness of hidden powers and mysteries."

Quoted from the last page of the book "THE MEDICAL FOLLIES" printed
in 1925 and written by Morris Fishbein, M.D.
Editor of the Journal of the American Medical Association

Seriously- JAMA!

sun, tanning, lupus

Like all the rest of you with lupus, I had to give up sun-worship.
This makes me incredibly sad for several reasons.

I love being outside in warm weather. I love the beach. I love to swim. I love lying in the sun like a lizard and getting all hot, then diving into cold water. And now when I'm outside in the sun for any amount of time, I can't enjoy myself because I'm filled with anxiety about whether my enjoyment is going to cost me my kidneys. I miss the doses of natural vitamin D and the smile a sunny day puts on my face. I feel like a vampire.

Aside from eradicating lupus from my life, which I'm always working on, I don't have any solution to all this.

But I do have a tiny temporary occasional solution to the one other reason I grieve my sun-worshipping days (I also miss how great I look with a tan, sun-kissed hair). I met someone in an acting class I was taking who does spray-tanning in NY city, and she uses all natural ingredients.
So, I think I might, for a special occasion (friend's wedding in July) treat myself to a "tan" just once, so I can feel like myself.

Meanwhile, I have found that when my lupus is under control, I can spend small amounts of time in the sun (not long enough to get a burn- like 10-15 minutes) and have no ill effects. Obviously, we have to be very careful with this, but FYI, some of us do become less sun-sensitive when the disease goes into remission.

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"

Friday, February 26, 2010

Another Lupus ebook

Hey friends
In my never-ending quest for better answers (better than drugs, side effects, more drugs, more side effects, ad nauseum and add nausea), I just purchased another ebook claiming to have some ideas of where lupus comes from and how we can get rid of it.

It was overpriced and didn't tell me anything i hadn't heard before, but it did remind fo some things I'd forgotten, and it did introduce me to a really neat idea for how to "brainwash" myself into achieving my goals, both health and otherwise.

Now the guy who wrote this thing is not a doctor, and does not have nor did he ever have lupus. And all his info was gleaned from 500+ websites and other people's e books, and listening to Tony Robbins. So there's your pretty big grain of salt. But hey, it's worth $47 to have someone sift through 500 websites and give me the summation.

He claims that most fo the diseases that are rampant in our society are lifestyle-caused. Caused by what we eat, mroe than anything. Despite the fact that this goes against what we're told by our doctors and by all those commercials for drugs on TV, this is not that radical of an idea, and lines up with everything I read in Eat To Live, which was written by an actual doctor who actually read 2000 medical studies.

In short, this author's (Mark Anastasi's) approach to ridding yourself of lupus (and pretty much any disease is this:
1) read his e book (I consider that optional, unless you don't know anything about lupus and have never heard the idea that poor diet and an acidic environment in your body cause disease)
2) do a detox (pick a program and follow it, probably best to be supervised)
3) take supergreens
4) take glyconutrients
5) buy his subliminal power software, which flashes positive subliminal messages randomly on your comptuer screen (you write the messages). this program is $39 (I am not paid to endorse this)

For me, it was a reminder about supergreens, the first time I'd heard about taking glyconutrients as a supplement (as opposed to just eating more fruits and vegetables), and an introduction to an interesting software program, which I might buy. After I recover from spending $47 on his book.

I had getting some contradictory information that disease thrives in acidic environments and yeast thrives in alkaline. It seems it may be possible, to have both acidic and alkaline conditions in one body; different systems can have different pH.

Found some good answers on pH here:

Monday, February 15, 2010

back to what worked before: acupuncture

Some of you have been following my recent struggles, fighting off a lupus flare while trying to avoid going on prednisone and losing my hair, gaining weight, and turning into a raving lunatic (gee, what's so bad about that?)

For the last 3 months I was on LDN (Low dose naltrexone), which has worked wonders for a number of people, particularly those with autoimmune conditions, and especially those with lupus. But for whatever reason, it was not helping me. In fact, my test results got worse. There are those who say I didn't stay on it long enough, and those who say I might have a thyroid problem, and those who say it's a candida (yeast) problem (that interferes with the LDN's effectiveness). But bottom line, as long as I was on LDN, I could not take any narcotics for pain, and since I don't have anything over the counter that I'm allowed to take that actually works for pain, I figured 3 months of constant pain with not relief constituted me giving it a pretty good chance to work.

Now, I'm not saying LDN doesn't work, or even that it wouldn't work for me, but it isn't working for me right now, so I had to change course. Maybe once I finally clear up all the yeast, I'll go back on it. Meanwhile, I figured, I created a remission last year using just chi gung, gluten-free diet, no nutrasweet, and acupuncture. I got discouraged because my remission only lasted 6 weeks due to a combination of stress and a black mold exposure. So, I guess I wanted an easy answer- just take this non-toxic drug every night for the rest of your life, eat and do whatever you want, and never have another flare. I wanted a magic pill (or in this case, liquid).

Well, as I've stated before, thankfully there are plenty of choices out there for paths to healing, and I'm going back to the one that worked for me before: acupuncture & chi gung. i've added some herbs I read about in "Cure Your lupus naturally," and I'm still gluten-free and nutrasweet-free. And it only took one acupuncture treatment for me to feel a little better. And now that I've had 4, I feel a lot better.

A word about acupuncture: some MDs also do acupuncture, but the only training they've had is a weekend clinic. "Real" acupuncturists have 4 *years* of training. Sadly, insurance will pay for the MD acupuncture but not the more effective real acupuncturists. So, good acupuncture is an out-of-pocket expense. Which is why I also do chi gung; it has the effect of very gentle acupuncture and you can do it yourself for free, and maintain your level of wellness between acupuncture visits.
A good acupuncturist is Chinese-trained and board approved by the NCCAOM. Go here to find one near you:

So, between the acupuncture and being able to take a narcotic when I'm in pain and can't otherwise sleep, I feel like myself again. I was really in a pit of despair after months of non-stop pain, and was losing my sense of humor, and becoming hopeless and defeated. That is so not me, but it goes to show you, a person can only take so much. Why suffer? My goal is to again get all my tests to turn around to "negative" (in this case negative is a good thing), to feel energetic, and to maintain the remission indefinitely.

There are 2 other elements I also want to deal with: emotional and diet. Although I avoid a lot of nasty things like gluten and sugar and nutrasweet, I need to eat a lot more fruits and veggies. Which is why I may be purchasing Montel Williams' healthmaster (an industrial blender basically)... Secondly, I'm trying to get into a reevaluation counseling group. If I do either/both , I'll keep you all posted.

Tuesday, February 2, 2010

Many paths to wellness

Right now I'm in the middle of reading my 4th, 5th and 6th lupus memoirs. 7 if you count the Lupus recovery diet. (did you know there were that many out there? yup).

I try to read without an agenda, but the fact is I always have the same agenda: did they get better? How much better? What did they do that I would want to also do? What did they do that I wouldn't touch with a 20-foot pole?

OK so here's the list of lupus books I've either read or am reading:
1) Heartsearch
2) Lupus Novice
3) Healing Lupus
4) Lupus: Alternative Therapies that Really Work
5) Cure Your Lupus Naturally (an e book)
6) Despite Lupus
7) Lupus Recovery Diet

Here's a really really brief "what I get from this book" for each of them:

1) heartsearch- has settle for having to dial things back a bit on a permanent basis. Got some relief from eurhythmy, an emotional release technique that was big in the 70s but not so big now. if you really search you might find a group near you. Some of the buzz on the internet accuses it of being a cult (whatever).

2) lupus novice- believe it or not this person also used eurhythmy. maybe she read book #1.

3) healing lupus- here's a person whose lupus was really really bad and who claims to be completely healed since 1978 (!) by going through emotional release. she was on a lot of powerful drugs for a long time to control the illness, btu was never successful at cutting back the amounts until she had an emotional breakthrough via reevaluation counseling. her book is filled with writing exercises. she suggests putting together a book group to go through it together. i don't even know how to begin finding people with lupus who are both open to the idea, nearby enough to get together, and willing to work as hard as the book asks you to work, so i'm going through it alone. But I also put in a call and hope to join a reevaluation counseling group here in my town.

4) lupus: alternative therapies that really work. this one is really into detox, and herbs and such. it's been a while since i read it.
some very specific and practical suggestions in this one. need to reread it.

5) cure your lupus naturally (e book by cheryl dowery) i just bought this last night. can you tell i'm desperately searching for help right now? because i just can't stand the thought of going on prednisone, or worse back into the hospital AND on prednisone. I'd have to sneak out in my street clothes every night for dinner. just can't deal! Anyway, I was in a weak moment and bought this somewhat overpriced book online last night. It's only 30 pages and is priced at $29.95. But if you go to the webpage and wait a few minutes, a window will pop up allowing you to buy it for "only" $19.95. i figured what the heck, if it really has a magic cure then i can think of a lot stupider ways to spend $20. Her claim of a cure is not really accurate; she acknowledges that you still have to monitor yourself and pace yourself; you can't do her regimen of herbs, etc. and then go get a 60-hour a week job and run a marathon (why, after 18 years living with this illness do I still hold that up as an attainable goal? Well, I do). Most of her ideas I had heard before, but not all. Affirmations, of course, improve your diet, of course, check for allergies, yup (she has an interesting way of doing it at home, no cost); detox, yes, Fish oil and flaxseed, probiotics, DHEA yes (though I didn't have the more effective liquid form of DHEA). And she did come up with a couple herbs I hadn't heard of/ tried, and one that is so gross I won't consider it. Maybe I need to be just a little more desperate.

6) despite lupus. this book is very by the book. what i mean is, reading this book is like going to 6 years' worth of (good) support group meetings. She's going to try to help bring you back down to earth, which in many ways is good, but she repeatedly tells you not to waste your time on stupid things like trying to get cured of lupus. Maybe I'm just an ass, but I can't accept that there is no cure. I can certainly accept that there is no MD who has a cure, but I can't accept that there is no help for me outside of prescription drugs and trying to acoid stress and sunlight. Anyway it's a good book, I just take issue with that one point, even if I am causing myself needless suffering by refusing to accept my situation.

7) lupus recovery diet. here's another book i spent too much money on; i bought it as an e book. it has a number of testimonials and lupus stories in it. I've been living with it 18 years, I don't want to read yet another biography of someone's struggle with the same symptoms. I don't even watch Sanford and Son reruns more than twice, and those are funny. Anyway the whole point of this book is this: lowfat vegan diet. there. there are some recipes, etc., but if you just want the punchline, that's it. BTW this idea is the same as the one put forth in Eat to Live by Joel Fuhrman, MD

so in summary here is what we have so far from my reading in terms of how to get that nasty illness under control:
1) emotional release via eurhythmy (and prescription drugs)
2) emotional release via eurhythmy (and prescription drugs)
3) emotional release via reevaluation counseling (and prescription drugs, but she does permanently get off the drugs, for decades now)
4) detox and herbs and diet
5) detox and herbs and diet/ allergy avoidance and affirmations
6) drugs, stress avoidance, support groups, compliance with doctor
7) lowfat vegan diet

(and as a PS, though there's no book on it for lupus, there is low dose naltrexone, which I'm on, but that non-toxic drug is not suggested as a "stand-alone" treatment; It's supposed to be combined with supplements, herbs, diet modification, etc.)

there you have it. 7 paths to wellness, or at least not-so-sickness. Could they all be right? yes, I think they could, just as maybe as the Native Americans say (about religion), many fingers point the the same moon. Can I follow all those paths at once? Probably not. After all, I'm dealing with an illness! There's only so much of me to go around.

Friday, January 22, 2010

update: 1/21/10

As I've posted before, I recently started taking LDN (Low dose naltrexone) in hopes of getting ym autoimmune activity back under control. I got my lab tests back on 1/15 and they were disappointing- I'm actually getting worse.
However, I do have to consider two things: I went on three trips in one month (airplane- very stressful and aggravating) and I got about 20 mosquito bites and spent a week in very unpleasant company right before my labs. Lupus is exacerbated by stress.
The other thing to consider is that when you use alternative medicine, sometime things get worse before they get better. Folks often call this a "healing crisis."

Of course at some point, when things get bad enough, you can no longer afford to wait for them to turn around, so I have not ruled out at some point resorting to getting a shot of prednisone to calm things down. I don't want to go on the oral daily prednisone if I can avoid it, because- as many of you know- it makes me gain 40 pounds, get a moonpie face and acne, have horrible mood swings, and lose my hair. I've already been through that 3 times, and I just can't face a 4th time until I'm sure I've tried everything else. My $40 nylon (itchy) wig sits on the other side of my office, reminding me how close I am to having to wear it again.

My rheumatologist understands my feelings on prednisone (I'm sure he's seen the results many times), and he saw me turn everything around last February- all my tests went to normal- via a gluten-free diet, acupuncture and chi gung. So, he told me to start taking 50 mg/ day of DHEA, and continue on the LDN. I'm also on a sugar-free diet and taking oil of oregano to kill off the yeast; yeast can really wreak havoc with your system, and LDN can bring it to the surface. I'm also taking 2 tablets twice a day of an anti-inflammatory herb (this concoction is called Cox 2), and 1 tsp fish oil, probiotics twice a day, and a multi-vitamin. I continue doing chi gung every day. I am also using foot detox pads, and doing the writing exercises in the book "Healing Lupus." Those exercises are about releasing toxic emotions.

It's not a very scientific approach; a scientist would change only one variable at a time, so he could figure out which change was the most effective. But I don't feel I have the luxury of time on my side, so I'm using numerous strategies together, in hopes that I can turn things around quickly and remarkably enough that I can avoid the prednisone.

In November, I met a guy who was a fan of my music for 5 or more years. He didn't realize I'd had so many health struggles (guess he missed my 3rd CD- every song on there is about medical stuff!). He's been on prednisone 15 years straight. No one told him about the long-term ramifications of taking prednisone (they are so serious I don't think the words "side effects do them justice). He has gout and diabetes, caused by prednisone. Or as the medical community would call it, iatragenic. meaning, caused by medicine. Kind of messed up that it happens so much- diseases and injuries caused by "treatment"- that they have a word for it.

My one unscientific observation I can make about my progress since the blood tests is that my shoulder pain finally let up today (knock on wood), for the first time since early november. I've been in constant pain since early november, and unable to take painkillers because they are incompatible with LDN. So just for today, I have a little relief. And it feels weird, like a friend (one who I can't stand, but got used to) is missing. Let's hope this friend stays gone. He's spent too much of the last 18 years hanging around contributing nothing good.

update 2/1/10 Happy to say still almost completely free of shoulder pain. Every now and then a little twinge will creep in at the end of the day, but I'd say it's 95% gone, thank heavens! Unfortunately, it seems to have been replaced by nightly headaches, If I must choose, though, I'll take the headaches. Clearly what I am doing is still not quite enough, so I'm going to try to get an acupuncture appointment this week. That always helps.

update 2/7 the headaches left and the shoulder pain returned. After almost a year of non-stop pain between fibromyalgia, morton's neuroma, back to fibro and headaches, and the resulting sleep deprivation and loss of morale, I decided the LDN is going to have to take a back seat to me keeping (or locating) my sanity. So I am stopping the LDN so that I can take narcotics for pain relief. I have returned to acupuncture, in hopes of getting the pain back under control so that I can get back off the narcotics, and back onto the LDN. Meanwhile I continue to take Oil of oregano to kill off the yeast, so that when I go back on the LDN, it will be more effective. I'm also taking a pile of other supplements/ herbs: liquid DHEA, olive leaf extract, garlic, MSM, liquid Vit. D, multivitamin, fish oil, probiotic, flaxseed, and curamin. And my BP med and attivan at night. If everything fails and I'm not any better at my next appointment in a month, I guess I'll do the dreaded and get a cortisone shot. We've always got that as a last resort. Who needs bones, anyway, right?

Monday, January 11, 2010

Update: 1/10/10

Nov. 16 I started taking low dose naltrexone, an old drug with a somewhat new use. It was originally developed in large doses to help get/ keep addicts off narcotics. In the process of using it on patients, as is often the case, they found it therapeutic for other things it was not intended for originally; especially it helps reverse autoimmunity when used in small doses, by fixing the shortages of endorphins, as best as I can explain it (for better more thorough explanations, go to

I was successful at reversing my autoimmunity last year by going gluten-free, quitting nutrasweet, and doing chi gung every day. It lasted a month or 2, then I had an exposure to a lot of mold and stress and it all went back downhill. I stayed gluten free, and asparatame (nutrasweet)-free, and now I'm back to the chi gung and trying to take on less work. Plus, I have the LDN now (low dose naltrexone).

I've been faithfully doing chi gung every day since the new year, sometimes twice a day. Now that I have the routine down, it takes less than 10 minutes. I was somewhere warm for a few days, so I swam some and stretched a lot as well. All that really seems to help my shoulder pain, which is not fixed, but better. Because I do not know the cause of the shoulder pain, it makes it hard for me to know if my illness is improving, because of the constant pain (which may or may not be connected to the overall state of my health). But I get blood tests done tomorrow, and see the doctor Friday, so I'll know soon whether my 2 months of LDN have made any difference.

A couple weeks after beginning LDN, I developed yeast problems. This is not uncommon. It doesn't cause yeast problems; it brings existing ones to the surface. And if you don't deal with the yeast, the LDN is not effective. So, for a month now I've been taking oil of oregano (P.U. it stinks and tastes gross- so it must be good for me, right?). I take it when i get up and before bed, and now I'm staying off sugar, in hopes of killing off the yeast (candida). There are some tasty non-nutrasweet chocolates out there, thanks to the diabetic association, though if you eat more than a mouthful, you'll be farting up a storm.

and of course I'm still taking the LDN every night around 12:45am. The discussion groups I found via have been really helpful in guiding me along the dos and don'ts of taking LDN. Blood tests tomorrow- here's hoping for some good news!