The Definition of Health, and my quest to settle for nothing less

I think of health as a spectrum.On one end, you're dead. On the other, you're flourishing.

Anyone who's everhad a houseplant or a garden knows the difference between a dead plant and a live one, and also the difference between a plant that is doing OK and one that is flourishing.

The World Health Organization defines "health" as:
"a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."

Let that soak in.
Not merely the absence of disease.
Complete well-being.

When we are diagnosed with a chronic illness, we are told to "accept" our illness and to settle for something far less than the WHO's definition of health. We are told by our doctors that such a dream is now unattainable for us. I have refused to believe this from Day 1. I do not and will not accept it.

I have tried all kinds of alternative medicine over my 21 years since being diagnosed. A lot of it has helped me tremendously, and I've been able to taper off all the lupus and blood pressure drugs, each of the 3 times I've had a flare. And my flares are not minor. They involve kidney failure, congestive heart failure, pleurisy, anemia, and even a stroke. Not mention hair loss, weight loss, fever, exhaustion, neuropathy and chronic pain. (OK I just mentioned those).

Our mainstream doctors are trained to treat us with only 2 tools: prescriptions and surgery. Yes, prescriptions such as prednisone are the reason I am still alive and able to sit here and type about anything at all. 50 years ago, lupus was a death sentence. So I definitely appreciate the existence of life-saving drugs, and I take them when I'm in trouble. I am NOT anti-drug.

However, long-term prescription use is *always* going to have consequences. And sometimes those consequences are very serious. And anyway, drugs can't get you to "flourishing." They can get you to the "not dead" zone, or even the "OK" zone, which is the best we're told top hope for. But being diagnosed in my early 20s, I wanted more than just getting by with "OK" for the next 40-60 years.
(Especially since "OK" seemed to mean, from the folks I saw at support groups back then, being 50-100 pounds overweight from the steroids, and thin to no hair. And in some cases, frequent surgeries to replace bones eaten by the steroids. How was this OK?).

Thus, my search for better answers all this time. I wish I could type up every single thing I've tried in one concise blog post, but we're talking 21 years of experiments on myself. And what works for one person doesn't always work for another.

However, there are 2 basic, sustainable habits I would recommend every lupus patient try:

- Qi Gong (also spelled chi gung). This is a deep-breathing, slow-moving Chinese art much like Tai Chi. Make sure you find a practitioner/ DVD that teaches healing chi gung, not warrior chi gung.

- diet modification (eliminating gluten, dairy, eggs, diet soda, sugar). This can be done on your own, or with a health coach, or setting up a pair or more of you to do it together. Or you can do what I did, and get a system that makes it very easy. Here is the system I've been using for the last 63 days. It's both really nutritious *and* it detoxes your system. It has completely eliminated my need for narcotics and I have slimmed down by 6 pounds with no exercise. I'm really pleased with this.

http://www.isagenix.com/en-US/Isamovie#cat=weightLoss&vid=9jeIL82Of9I

Cheers and good health!

Carla
The Singing Patient
carla@thesingingpatient.com

http://www.thesingingpatient.com

Day 17 vlog: Farts and dealing with doctors

Carla

Prednisone 2: Importance of weaning off meds carefully

There's so much to say about Prednisone I couldn't fit it all in one post.
So here's another.

Did you ever notice that when you get a 6-Day pack of prednisone (or cortisone, same idea), you start with 6 pills a day then 5, then 4, then 3, then 2, then 1? There's a reason for that. Corticosteroids like prednisone and cortisone replace the hormones that run your vital organs. And there's a lag time between your stopping the drug and your body restarting making that hormone on its own. So you MUST taper off prednisone. If you stop taking it suddenly, you can end up feeling really awful.

Prednisone works by suppressing your immune system. So if you have a horrible poison ivy rash (or a rash from an allergic reaction to oh let's say a drug http://lupusandhumor.blogspot.com/2013/02/prednisone-vs-killer-drug-reaction.html ), that's your immune system creating that rash. And by suppressing your immune system, it gets rid of the very uncomfortable symptoms.

When you are using prednisone to control an autoimmune disease, you are on prednisone for much longer than 6 days.

I never wanted to go on prednisone for lupus in the first place because while I was waiting for my first rheumatologist appointment (and prescription) I read about all the horrible long-term and short-term side effects. But I was literally dying and prednisone saved me. And once I was back on my feet and going to support groups, and meeting people who were obese because of long-term prednisone, or getting joints replaced because of prednisone, I wanted to get off the prednisone. Plus I couldn't sleep and I was gaining weight like mad. I gained 10 pounds in just the first week.

The doctors want to wean you off prednisone if possible, because of all the dangerous long-term side effects, but it has to be balanced with controlling the lupus (or other autoimmune disease). Prednisone is not a cure; it's just basically calming down the immune system. If you come off of it too quickly, or, God forbid, just stop taking it all together, your disease can come back full force. (This is even true of blood pressure meds. if you stop taking them suddenly you can end up with "rebound" high blood pressure). The answer is almost always to wean off the meds gradually.

When my doctor first instructed me to lower my prednisone doseage, we went from 40 mg to 30mg in one swoop. Wow i felt like crap. I was exhausted and achy and felt like I had the flu for 3-4 days. I realized it was not the flu, or lupus, but prednisone withdrawal. So from then on, if she said to go from 30 to 25 I'd go from 30 to like 29 for a couple days, then 28 for a couple days, etc. (I just cut off gradually bigger slivers off my pills each day until it got to the "cutline" down the middle). I didn't want to spend 3 days in bed from prednisone withdrawal every time we cut the dose.

Prednisone can be cut with a pill cutter (get one at a drug store for a couple bucks). Some pills (like my blood pressure med that I'm finally off of) cannot be cut, because they are coated and are slow-release meds, so you have to get a new prescription for a lower dose.

One more story, this one about my aunt. My Aunt Pat had brain cancer. They gave her gamma "knife" radiation. She had had a stroke and lost the use of her left hand, just like I did.  So they put her on prednisone to hold down the swelling in her brain. Aunt Pat is the person who inspired me to play guitar when I was little. So she was just as devastated as I was to lose the use of her left hand. She was slowly regaining it and making good progress.

Then she was getting annoyed at the insomnia and decided to cut the prednisone in half. From 40 to 20. In one day, poof! Just decided that on her own. That night she had a long seizure and ended up in the hospital, having lost all the progress she had made. Doctors cleared her of the cancer but she died anyway a month or so later. I believe she died of hopelessness. There were other factors in her life that were troubling her, besides the huge setback from the seizure, but I've always felt guilty for not insisting she go take that other prednisone pill when she told me she had decided to cut the dose herself. She might still be around, and playing guitar.

So I'm telling you now. Wean off your meds slowly and carefully, and keep monitoring your symptoms and get regular blood tests while you do so. Please don't ever stop suddenly. I realize people are going to do what they're going to do, but at least now you know the consequences going in.

There are other drugs for lupus besides prednisone. Prednisone is just the cheapest, fastest, oldest and most commonly used treatment for lupus. I will discuss those other drugs in another post. And treatments that involve no drugs.

Cheers-
Carla

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient

Treatments for Lupus: Prednisone

When I was diagnosed with lupus by a mainstream doctor, and then sent to a specialist (rheumatologist), I was given two choices: take prednisone or get cussed out. I didn't know about the cussing out option until I went for my second appointment and hadn't taken the prednisone. The thing is, I had read about all the side effects of prednisone and to me it sounded worse than lupus.

But here's what I eventually learned (the hard way): if you have systemic lupus erythematosus (a.k.a. SLE, lupus, lupus SLE, systemic lupus, or lupus erythematosus, or even the misspelling "lupis")....where was I? Oh yes, if you have lupus, it's not going to just go away by itself if you just wait it out, like a bad cold or bronchitis. I tried that. I got very very sick, down to 80 pounds. Lost most of my hair, kidneys failing, too weak to get out of a chair, constant pain. I would have died if I hadn't finally decided to get on some medication.

The first thing I did after being diagnosed was go to the library (this was 1993, pre-internet) and look up "lupus" in the encyclopedia. It said that people who were diagnosed with lupus usually died within 5 years of being diagnosed. This was very old information, because it was obviously written before they found out they could control lupus with drugs. I did not know it was old information at the time.

The next year I met a woman who was one of the first people to be given prednisone for lupus. They didn't know what dose to give her, so they started with 250mg. That is not a typo. Seriously. Can you imagine? I go bonkers on 40 mg. She found herself at a dinner party one night and before she realized what she was doing, she pulled the salad serving bowl in front of her and started eating out of it with her hands.

I did eventually go on prednisone. The pattern has been this: I take prednisone for about 9-10 months. And then I've been able to wean off it. Then 4-8 years later, the lupus goes bonkers again and I go back on the prednisone. Repeat.

Now when websites and doctors talk about lupus, they say it goes in cycles of "flares," rather than saying you'll be dead in 5 years. I attribute this change to the use of medications to quiet the disease. And I attribute the cycle of flares to the coming off the drugs and going back on them. Which is why some doctors try to keep patients on a "maintenance" dose of prednisone (or some other drug), in order to prevent future flares.

I rely on prednisone and it works for me but I hate the side effects and it's dangerous to be on it long-term. So I have searched high and low, near and far for other more natural options to build up my health and quiet the disease.

I've done acupuncture, chi gung, bodytalk (energy medicine), chelation therapy, chiropractic, lymphatic massage, regular massage, physical therapy, movement therapy, talk therapy, life coaches, psychiatry, got all my metal dental fillings removed and replaced, became self-employed and pursued my dreams (yes happiness affects your health), cut toxic people from my life, and changed my diet.

Out of everything I tried, the diet change (cutting out gluten, dairy, nutrasweet and MSG) and chi gung actually made all my lab tests straighten out, and I got the first negative ANA test I've ever had since 1993. And they basically cost nothing.

My last lupus flare was in 2006. I went on 5-6 drugs (including prednisone). I was able to wean off most of them within a year, except for the blood pressure drug, which I finally weaned off of just this past month. I feel like I'm in pretty good control of my heath now, because for me the diet makes such a huge difference. I have several big motivators to stay on that diet: not wanting to suffer from lupus, not wanting to suffer from prednisone, and not wanting to limited in what I can do physically.

I don't really care if a doctor cusses me out. That's not a motivator for me. In fact, it makes me that much less likely to "comply."

But now, because I have experienced the consequences of taking and not taking any medication while lupus is chewing up my organs, I am rather open to the idea of pharmaceutical intervention. If I ever have another lupus flare, yes, I will take prednisone (and ask people not to take my picture while I have a moon face). It's cheap, it works for me, and it has saved my life 3 times.

Prednisone was the first effective treatment for systemic lupus. Before that there was no hope. Just start planning your funeral. So, although it makes me batty, and it tastes like Ajax (I've accidentlaly bitten a pill more than once), I'm grateful for this drug. There are other medications out there for lupus now, as well as effective non-drug treatments, and I will talk about them in another post.

Meanwhile, here's a song I wrote about my love/hate relationship with prednisone.



From the CD



Carla
Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich - more videos

What is Lupus?

Found this great infographic to share with you. May is lupus awareness month, and I have been planning to write a series of posts addressing the most commonly asked questions about lupus "What is lupus?" "What are the symptoms of lupus?" "Is lupus genetic?" "Is lupus contagious?" etc... Well, this infographic answers quite a few of the most common questions. But not all of them, so I still have something to write about. Meanwhile, here's a quick guide to lupus for those whose only knowledge of lupus is that "it's never lupus."

Lupus Infographic infographic by manro. 

They need to work Toni Braxton into the "celebrities" section, because she has been very open about her lupus, and that is risky for someone who is still actively pursuing a career in entertainment.

What else would you want to be included on this infographic? 

Carla Ulbrich
PS Just learned that there is a new updated infographic from these same folkswith lots of new info on it:
http://www.achieveclinical.com/news/lupus-awareness-month-purple/

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
http://www.youtube.com/user/carlaulbrich - funny medical songs

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
 

Prednisone vs. the killer rash Part 2

In the great battle of Prednisone vs. the killer systemic rash, the prednisone has WON! My rash has pretty much disappeared. As has my prednisone. I took the last one yesterday (it was a 6-day pack where you take 6 pills on day 1, then 5 on day 2, then 4 on day 3, etc.).

These last couple days I was getting headaches from prednisone withdrawal. I knew that was what it was because I've been through prednisone withdrawal several times now. Three times I've been on prednisone for 9-12 months to control lupus, which was attacking my kidneys, lungs, heart, you name it. And every time we cut the dose, I'd feel like crap for 3 days. If we cut it a lot, like from 40 to 30 mg in one swoop, I'd feel like I had the flu for a few days- achy, exhausted, sleeping 14 hours a day. So, it's good to just remember "Oh yes, it's just prednisone withdrawal. It's not me getting sick again, or getting something else. This will pass." And yeah I took an Advil yesterday for the headache. I'm not a martyr.

Yesterday I took my last prednisone pill of the 6-day pack and today I did something I *never* do- I took a nap. For an hour. I really didn't want to get up, with my sweet little furry friend curled up by my chest (the dog, not my husband), but we had a valentine's dinner to go to (with the hubby, not the dog), and anyway if you nap too long, you can't sleep at night. Boy those little furry friends can relax you right to sleep.
Here's our dog making sure my hubby gets a nap:

Before the withdrawal, I got to enjoy a couple days of prednisone mania. Some people use the mad amount of energy prednisone can give you to clean the house. I used mine to write 2 ridiculous songs, start 3-4 other songs, and finish and record one other song I've been working on. This is the fun part of prednisone.

The not-fun parts of prednisone, of course, are the withdrawal, and, if you stay on it long-term: hair loss, weight gain, mood swings, osteoporosis, cataracts, diabetes, insomnia (already have that, pass on having even more thanks!), and that lovely moon-shaped face. I can't believe I'm about to do this, but here are before and after pictures of me on and off prednisone.  I actually weigh *less* in the prednisone picture (the middle picture) than in either of the others. I'm about 95 pounds in the prednisone picture, but the drug puffs my face up so much I look like I weigh 500 pounds. I considered putting pictures like this in my book, but my publisher (probably wisely) decided against it.

Carla before prednisone:

during prednisone (obviously, no makeup):

after being off prednisone for a while (also no makeup):

After having my looks altered this drastically once, you can only imagine how desperate I'd have to be to ever go on prednisone again. But I did. Two more times. I resisted every time because of these effects. It always came down to the realization that I would die if I did not take this drug. So, I owe it my life. But I always do everything I can to not be on it long-term, and that's why I'm on a gluten-free dairy-free, no egg, no nutrasweet diet. Those are my food allergies and if I avoid them, my disease stays quiet. And I don't need prednisone. Unless of course something happens like this past week and I have a severe allergic reaction to something else. But that's short-term prednisone, and I can deal with that.

I've said this before, but I feel it bears repeating: if you are on prednisone, do NOT EVER suddenly stop taking it. Prednisone replaces a hormone that controls your vital organs and there is a lag time between when you stop taking it and when your body starts making it again. This is why you MUST taper off the drug slowly, or you will go into crisis and end up very sick or dead. Or worse, on even higher doses of prednisone.

Well wishes to you-
Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Come Back When You're Sicker

Question:
I've had dry eyes for 12 years, constant phlegm in my throat for 3 1/2 years, dry mouth for 6 months.  7 doctors over 3 years can't figure out the phlegm problem. When the dry mouth came along 6 months ago, the internet led me to Sjogrens.  My primary doctor said, "Maybe. But if it is, there is nothing we can do but manage the symptoms."

At my annual eye appt., I told my eye dr. about the phlegm and dry mouth (he of course already knew about the dry eyes) and he said we need blood tests: "sounds like Sjogrens but we need to find out if it's primary or secondary."  Had the blood tests last week.  Can't get into a Rheumatoligist until the end of January.  In looking at the blood tests I still have no idea what I have.

ANA screen is positive and speckled (1:40). Rheumatoid Factor: 11 - says less than 14 is good.  Sjogren's Antibody (SS-A): negative.  Sjogren's Antibody (SS-B): negative. SED RATE: 2.  It sounds like Sjogrens but the blood test says no.  I read that of 11 Lupus symptoms and you need at least 4 to probably have lupus.  I only have the positive ANA. None of the other symptoms.  My middle right hand finger has been hurting at the bottom joint for a week and a half but I don't know if I injured it or if it's arthritis coming on.  That is the only thing close to maybe having 2 Lupus symptoms instead of just the ANA. I am baffled.  Any ideas?


Hello!
Thanks for writing.
It sounds like your symptoms are not severe enough yet that they have developed into an easily-diagnosed disease.

That's bad news in that it's hard for you to get an answer but good news in that you still have pretty good health and quality of life, it sounds. Doctors often tell someone like you "come back when you're sicker" so it's easier to diagnose. How about instead, if you don't get sicker and just get all better?

It definitely sounds like to me that something is "off" and you are getting warning signs from your body that you are on the wrong track, either with stress, or your eating habits, environmental allergy, or something else in your life that needs to change. It's causing your body distress and the symptoms are its way of asking you to get back in balance.

First I would look for food allergies, or other allergies, because of the phlegm.
The first thought that came into my mind when I read your message was "Is she eating dairy regularly?" Dairy can cause a lot of phlegm. Other food allergens are gluten, soy, eggs, nuts, corn, yeast.

Have a look at this article from Dr. Mark Hyman and see if it resonates with you.
http://drhyman.com/blog/2012/02/22/how-hidden-food-sensitivities-make-you-fat/



Another progressive, nutrition oriented MD is Dr. Joel Fuhrman (www.drfuhrman.com). He has had numerous success stories with healing "incurable" "chronic" diseases like Psoriasis and Lupus (and probably Sjogrens too- many people with lupus also have Sjogrens diagnosis, including me). I have reversed my bad blood tests and vastly improved my health by eating gluten-free and dairy-free and getting rid of nutrasweet (asparatame, diet coke) and eating a lot more plant food.

You don't have to slide downhill. You don't have to end up witha  disease that you can just "manage." You don't have to live with phlegm in your throat for the rest of your life. You can nip this in the bud and not have it turn into Sjogren's, or any other autoimmune disease.

well wishes-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs

www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient

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

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

Lupus and Marriage

Dear Carla,

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

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

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

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

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

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

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

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

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

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

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

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

I wish you both all the best-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

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

www.linkedin.com/in/carlaulbrich

www.twitter.com/singingpatient

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

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

I almost joined a cult

In my book, I mentioned reevaluation counseling as a great way to let off some steam and work through some emotional issues. I now want to retract that recommendation, and here's why.

I read a book several years ago titled
Healing Lupus: Steps in a Personal Journey  by Waverly Evans.
It is a self-published book and largely a workbook. Waverly had severe lupus and was able to completely heal from it doing just emotional work. She does not mention changing her diet or getting acupuncture or doing yoga, although looking at her website, she is now a yoga teacher and massage therapist, so those modalities may have been part of her healing journey as well. In the book, however, she gives much of (all?) the credit for her complete healing from lupus to Reevaluation Counseling, but it's important to not that at the time she was also doing "normal" counseling, as she was enrolled in a degree program in a normal university setting.

I believe we can heal from lupus. I do not accept the mainstream idea that all you can do is "manage" the disease with drugs and that you have to accept your "new normal" and just lower your expectations. Unfortunately, those who are putting time money and attention into research are focused entirely on drugs and genetics, adn I don't think they are going to find any answer there that will actually heal people. It might help people, and keep them from dying, but I don't think tweaking genes and administering drugs is going to free people from disease. I do believe that nutrition can heal people, often completely. And I do believe that people can be healed through spiritual means, and maybe emotional means as well. There are many kinds of healing.

Therefore when I read her book, it gave me hope that something as simple as sitting with another person and sharing your deepest hurts and releasing them might unburden me and allow me to completely heal. Because although I live drug-free and my lab tests are often negative for lupus, I do still suffer from frequent pain in my neck and shoulders (even when my labs are negative for lupus) and frankly I'd love to not have to work so hard at my diet. I am "managing" my lupus with diet. It beats managing it with immune suppressant drugs, but I'd love for it to just be gone. a Non-issue.

So... my wish for this is what led me to seek out reevaluation counseling. I wanted what Waverly had, total freedom from lupus altogether. And it sounded entirely benign and it cost nothing to try. So why not?

I went to rc.org and tried to find someone in my area. It took several weeks before someone responded to my inquiry, and then I found someone only 15 minutes from my house who was willing to teach me how to do co-counseling. Co-Counseling and reevaluation counseling are terms that are used interchangeably within the reevaluation counseling community. But reevaluation counseling is specifically one organization, and it is... a cult. I'm sorry to say it, but it's a cult.

For 2 years, I co-counseled with the person I found in my area. Sometimes there was another person or 2 and we would co-counsel as a group. You agree on how much time to spend per person, set a timer, and take turns talking about whatever issue you want to work on. All perfectly harmless, and even helpful to be intently listened to and not interrupted. It was all going fine, no problems at all. Normally, I learned later, people do not join RC (reevaluation counseling) the way I did, by reading about it in a book and seeking it out on the internet. Normally, people are invited to a "class" by a friend, and they attend class where they learn the techniques and beliefs behind RC.

Then I went to the weekend workshop, at at retreat in the mountains. It was very "important" that I go because THE leader of RC was going to be there giving talks, and he only comes around every 4-5 years. And it was at this weekend I started seeing red flags. People who needed to take psych drugs would whisper about it and not want anyone to know. One woman I counseled with confided with great shame how she liked to have a glass of wine, or even two, at night, and that RC teachers aren't allowed to drink (or have caffeine by the way) and that by drinking wine she was "letting down RC." In my head the word "fundamentalist" popped up. Then I went to a "mental health liberation" workshop, where the thrust of the leader's 30-minute talk was that there is no such thing as mental illness, only people who needed to "discharge" (laugh, cry, scream, etc.- IOW, release their emotions). No one should take psych drugs as they suppress the problem. I talked to my husband on the phone and told him about this workshop and he said "what?! sounds like Tom Cruise."

Oh, and apparently being gay is a mental illness caused by early distresses and can be cured with RC. And people expressed how they wished their significant other would give up 12-step and just come to RC and be healed. And although it claims to be about helping individuals, the larger goal of RC is radical left-wing politics.

People are encouraged to 'work early'- in other words, focus on their horrible childhood memories. And the good ones. And if you don't have any, they tell you to pretend you do, until something comes to you (this is where we get into the manufacturing false memories territory). When each of us was asked to share our earliest happy memory, I shared about playing with my cousin when I was 5. One guy shared how he remember growing arms as a fetus. Uh... really? (i'm sitting there thinking- why is no one doing a spit-take?).

When I got home, I googled "reevaluation counseling + cult" and wow, lots of hits. Harvey Jackins, guy who started this quasi-religion is now deceased but his son Tim carries on his 'work' (all the RC literature is written by either the founder or his son) and got his start in Scientology. Harvey was one of the right-hand men to L Ron Hubbard. OK, now it's all making sense. The more I read, the more Jim Jones parallels I saw. He has also, like many cult leaders, been accused of sexual assault on members of the organization. He also wants to change society via RC. If people criticized the leader, they were "excommunicated."

I never got "properly" indoctrinated because I never enrolled in a "class" (the normal way most people enter RC- a friend brings them in. They read all the literature, hear the lectures, then aim to become a teacher and work their way up the hierarchy ladder to teach workshops on things like... well, how mental illness doesn't exist).

For 2 years I did reevaluation counseling with my nearby friend, and it helped me sort through some problems and feel like I was heard. I believe we all have a deep divine intelligence, and if it is honored, and we are allowed to speak and think for ourselves, we can solve many issues through our own clear thinking. But we must be allowed to do so without being required to accept all these strange beliefs that come directly from scientology. Because once I am forced to accept those beliefs, I am no longer thinking for myself. Which is very dangerous.

There are other organizations out there, such as Co-counselors International, some of which are formed by ex-RC members who just do co-counseling without the RC beliefs. Just getting together and doing active listening. I may give one of these a try. Or maybe I'll just get a normal therapist,  or do some assertiveness training and journal my thoughts (which I do every day).

In conclusion, I retract my recommendation to seek out or join re-evalution counseling. I apologize for making this recommendation and including it in my book before I truly understood what it was. I had every reason to believe it was simply people getting together and listening to each other. I do believe active listening is a very healing tool and using this simple tool outside the "organization" of reevaluation counseling is helpful and healthy.

I stand behind everything else in my book. I hesitated to admit all this publicly, because it's embarrassing that I almost got sucked into a cult, and I worried about losing credibility by writing about it. But as a writer, I think you lose more credibility if you can't ever admit you made a mistake. And more importantly, I don't want anyone to get sucked into a disempowering cult because I recommended it in my book. Decide for yourself, but from all I have now read about it (not counting the book that led me to seek it out), RC is rehashed Scientology and a cult of personality. Mea culpa.

Here's a webpage with some articles about it:
http://home.comcast.net/~reevaluation-counseling/articles.html

Here's the wikipedia page:
http://en.wikipedia.org/wiki/Re-evaluation_Counseling

As always, in the spirit of wellness-
Carla

www.thesingingpatient.com

Sharing Your Experience, Strength and Hope with Others

I'm a contributor to the website Allexperts.com on the topic of lupus.
I frequently get questions from people asking me to diagnose them- they send me all their lab numbers and want me to tell them whether I think they have lupus.

I guess they figure allexperts.com is manned with MDs or lab techs who are answering these questions in their free (ha!) time, but no, it's usually just folks like me, a fellow patient with a few more years' experience.

And even if I were an MD, I don't think I would diagnose someone over the internet without actually seeing them in person.

Still, I am really glad people reach out for help and write to the website, because it's so important not to just sit at home alone wondering if you're going to be OK while you're waiting for 3 months to see the specialist, in patient purgatory.

Most recently I was asked whether lupus was genetic and whether there were any new breakthrough tests. Here is my response (with name removed):

Hi-
Thank you for writing.
I'm so sorry for all that your family has endured.

There still isn't really definitive proof that lupus is genetic, but there definitely seems to be a connection to pregnancy and things flaring up.

Regarding tests- I do not know of any breakthrough tests.
But I can tell you if you ever do get definitively diagnosed with lupus, the medical solution will be to suppress your immune system. That will give you relief from symptoms, but as you can imagine, going through life with a suppressed immune system has its own set of problems that come with it.

I don't know about you, but when I developed lupus and my body was turning against itself I wanted to know why, for heaven's sake! All these tests and drugs and diagnoses- but no one could tell me WHY?

20 years later (I was diagnosed in 1993 after 2 years of going to doctors getting one different diagnosis after another until they finally looked for lupus), I have come to believe that my illness was caused by chronic stress and a diet lacking any real nutrition. I drank a lot of diet soda and rarely ate a fruit or vegetable, worked at a job I hated, 6 days a week, and had no time for fun or for doing what I wanted to do with my life. Not a recipe for well-being!

In 2002, I had 2 mini-strokes and was on 9 drugs plus chemo and transfusions to get the lupus problems under control. I am now symptom-free and drug-free. I live a life I love and I eat a lot more real food (I'm not perfect- I do eat chocolate!).

I was tested for delayed food allergies (most regular MDs will not take that seriously), and after I eliminated gluten, dairy, and nutrasweet, all my lupus tests went negative- as in no sign of disease.

So... I'm just one person, but I'm one very healthy person who used to be very sick. In fact I'm healthier than most of friends who don't have lupus! I do aerobics 3-5 times a week (Sweatin' to the Oldies never gets old!)- this is something I only dreamed about when I was hobbling around using a cane, unable to leave the house for a month because I couldn't get up and down the one stair to the outdoors. We can get better.

I wish you well, my friend, and send you love light and hope
Carla



Having read and answered dozens of these questions now, I think most people who write in are looking for hope and reassurance, and to know that someone cares.  If you have some of that to offer in any area and are willing to give an hour or so a week of your time, hop on over to allexperts.com and sign up to be an expert. Or join a local support group, or an online chat group, if you have an illness, and be there to help people who have just been diagnosed. You might be surprised what you have to offer a fellow human being who needs a little support.

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs


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

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

Food Allergy Part 2: Food Allergies vs. Food Intolerances

What's the difference between food allergy and food intolerance?

I'm not an expert, but as near as I can tell from reading and researching this topic, here's the difference:

An allergy to a food involves an immune system response. That means when you eat a food you are allergic to, your immune system creates antibodies against that food. If you're unfortunate, some of those antibodies generated may also attack YOU- in other words, an autoimmune response.

According to wikipedia (and several other sources agree), "Food intolerance is negative reaction, often delayed, to a food, beverage, food additive, or compound found in foods that produces symptoms in one or more body organs and systems, but it is not a true food allergy. A true food allergy requires the presence of Immunoglobin E (IgE) antibodies against the food, and a food intolerance does not."

Now here's where the confusion and disagreement begins. Wikipedia, and most other sources, are saying that:

1) an allergic reaction involves an immune response
2) an allergic reaction is defined only by the presence of IgE antibodies.

But what about other antibodies? Specifically, what about IgG antibodies? I'm not a scientist or a doctor, but if you're generating antibodies, isn't that an immune response?

In 1994, I was tested (a blood test) for food allergies by an MD. We did an ELISA test, which measures IgG antibodies created when exposed to a panel of foods.  IgG antibodies, I was told, are the ones that manifest in delayed reactions. So this doctor was testing me for food allergies that create symptoms up to 3 days after eating the food.

IgE just tests for food allergies that show up within about 12 hours of eating the food. I hate to point out the obvious (OK,  I lied- I love to point out the obvious), but if I react to a food within 12 hours of eating it, I don't need a blood test to tell me that. I eat shrimp, I get hives a few hours later. I only need to eat shrimp 2-3 times before I connect the dots. What I need help with is the stuff that shows up long after I've forgotten I ever ate it. And that was the purpose of the ELISA test.

As for the difference between a food allergy and a food intolerance, let's try this again:

 -a food allergy happens within 12 hours of eating a food, and involves an IgE antibody response by the immune system
- a food intolerance is more loosely defined, but I believe it's any delayed negative reaction to a food, and the IgG antibody (also an immune response) has been lumped in with other possibly non-allergic reactions to food.


Some people think the ELISA test is experimental, or a sham, or {insert derogatory term of your choice here}, but it was a tremendous help to me. The blood test revealed strong allergies to wheat, milk, eggs, and cheese. I stopped eating those foods and my lupus tests completely cleared up.

I got tired of working so hard at my diet (have you tried eating at a restaurant and finding something with no wheat or dairy?). I slowly fell off the wagon, and eventually forgot all about the tests and the diet and... oh, look I got sick again. Very sick. Stroke, kidney failure, congestive heart failure sick. "Is she going to make it?" sick.

I've been gluten free this time for about 5 years (Just FYI, I also eliminated aspartame at that time).

After rediscovering my blood test results, I am back to also being egg-free and dairy-free (and still aspartame-free), and my inflammation and autoimmune blood tests are improving again.

So go ahead, various credible sources on the internet and in books, and mock the ELISA test. I will take my "sham" results, implement the diet changes, and enjoy my improved health.

And to you, my friends, there are other ways to discover your food allergies, in addition to the (I believe useful) ELISA test. I will share those ideas and more in future posts. Stay tuned to this bat-channel for more episodes of Fun with(out) Food Allergies!

Carla

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

Carla Ulbrich, The Singing Patient and Health Coach

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

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

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

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

Food Allergies Part One

A long time ago, I read a chapter in a big gray booked simply titled "Alternative Medicine."
It's a fantastic book; it has info on all kinds of ailments and their suggested methods of alternative (non-pharmaceutical) treatments listed for each.



Of course, I turned right to the chapter (well, page) on lupus. One thing that jumped out at me was the claim that 100% of lupus patients have food allergies. ONE HUNDRED PERCENT? That makes the odds of my having food allergies, well, 100%.

So how was I going to find out what my food allergies were?
I did some poking around, in slow motion. reading and phone calls- this was 1994, so there was no internet to speak of. And I lived in South Carolina- not the bastion of progressive thought. What takes you 10 minutes to find information on nowadays took me weeks and persistence in 1994, if I could find anything at all.

I ended up getting an ELISA blood test from an MD who did complementary medicine. That's what we were calling it in 1994. You could also call it integrative, alternative, holistic, or functional medicine. Or, if you're really closed-minded, or enjoy being and staying sick, or have all your money invested in pharmaceuticals, you call it quackery.

There are a lot of opinions out there about food allergies, and they all contradict each other. (Why should any information that could be so helpful be straightforward and simple?). Over this series of posts (I don't know how many there will be yet!), I'll explore food allergy symptoms, most common food allergies, conflicting opinions on food allergies, and methods of testing for food allergies. The perhaps  I'll reveal my own food allergies in case you want to bake me something toxic in an effort to bring about my early demise.

Stay tuned, healthy people- and all of you who are on the journey to reclaiming your health.

Carla

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

Carla Ulbrich, The Singing Patient and Health Coach

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

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

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

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

Lupus and Diet

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

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

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

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

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

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

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

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

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

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

Carla Ubrich, The Singing Patient

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

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

Candida. Part One of many, I'm sure

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

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

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

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

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

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

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

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

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

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

To your good health and mine!
Carla

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

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

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

Sjogrens vs Lupus: Smackdown

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

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



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



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


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

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

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

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

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

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

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

The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").

Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.

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

Sjogren's syndrome symptoms include:

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

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

lupus symptoms which overlap with Sjogren's symptoms:

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

   

lupus symptoms which do NOT overlap with Sjogrens:

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

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

A few things to consider asking for:

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

End of rant, and a few reasonable parting words:

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

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

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

And one last thing...  %$#*&*#*!!

Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

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

raw paleo diet cures lupus? discuss!

http://www.myhealthblog.org/2010/03/26/lupus-treatment-success-rate-100-via-paleo-diet-in-france/

This guy says we should all be eating all raw, including raw meat (ew!)
I totally agree that diet has an incredible impact on health, and that we should avoid dairy and processed food.
I've even heard you should avoid the nightshade family of food (tomatoes, potatoes, peppers, eggplants), and i don't eat these foods much at all. They all give me heartburn anyway.
After I learned what margarine was made for- to fatten up turkeys- I gave that up as well. Anything buttery that won't melt? gross.
Eating loads of fresh veggies and fruit? I think everyone agrees with this, even our government, and they're not exactly cutting edge with nutrition.
I'm not so sure i'm ready to give up rice or nuts and seeds, but I will entertain the idea.

And this I know: I darn sure am not eating raw meat.
That just doesn't make sense to me, because I read elsewhere that 100% of lupus patients have low stomach acid. How are we supposed to digest it? And secondly, raw meat is filled with pathogens, and we have suppressed immunity; how are we supposed to fight off things like salmonella- and worms? ew, ew, EW!!!

All the same I am pleased to see someone doing some research on the impact of diet on lupus, because it is something we can control it's not drugs, and it is an affordable cure.
As for my feelings on raw meat?
Well, feel free to disagree.
In fact, discuss.

note: rebuttal article:
http://www.scientificamerican.com/article.cfm?id=evolving-bigger-brains-th

Well wishes to you all-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

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.

http://gothamglow.com/
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
Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Low Dose Naltrexone

I'd like to be more excited about the announcement of a new drug specifically for lupus called Benlysta. I really would. But it is effective in about 42% of patients, and the placebo worked for 34%. And I am certain, with this being a genetic tweaking kind of drug, it's going to be very expensive. In fact, I'm sure it is, as Glaxo-Smith Kline is aleady referring to it as a "very major" opportunity:
http://www.forexyard.com/en/reuters_inner.tpl?action=2009-11-12T205006Z_01_N12429750_RTRIDST_0_HEALTH-SUMMIT-GLAXOSMITHKLINE-BENLYSTA

So I'm sorry. I appreciate all the hard work and even more the fact that someone is trying to develop something specifically for lupus.

However in my mind, the next great hope for autoimmune disease is something that has been around for a while and is cheap- and I gotta say after 17 years of dealing with the horrible effects of lupus and the equally horrible effects of the drugs used to treat lupus, I am ready for something else, especially if it is cheap, non-toxic, and doesn't suppress your immune system or screw with your genes.

I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.

My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!

So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.

Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."

I just took my first dose as of 11/16/09. If it is going to be effective for me, I should notice improvement in 1-2 weeks. It tastes gross, but hey, it's only 1 milliliter. Not any worse than prednisone. I'm already gluten and dairy-free, and off opiate pain-killers, so the typical interfering factors are a non-issue. Here's hoping.

To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.
http://www.lowdosenaltrexone.org/

A doctor talks about the effectiveness of LDN for autoimmune disorders, specifically RA and Systemic Lupus:
http://www.youtube.com/watch?v=nttilGKpJvU

update 11/22: not quite a week on the LDN. I've had really uncomfortable fibro pain all week, which actually started before I started taking the LDN, but once you start LDN you can't take narcotics anymore. So, I was left with picking from my basket of old tricks I've used for the first 15 years of this illness, during which no one ever gave me any narcotics unless I was in the hospital. Hubby gave me shoulder rubs, which gets the pain from (scale of 10) from a 10 to, say, a 6. Used capsacium (Salonpas) patches which helped get it down to a 4. Still makes it hard to sleep. Taking Aleve and/ or prescription aspirin, shaves the pain down to a 3, slept propped up for several nights. I have only 2 nights of insomnia, a side effect of LDN for some people.

update 11/29: The pain is still not under control but I do seem to have more energy- I can do more in a day- and my brain fog is nearly gone. For the last year, I've barely been able to finish a sentence without losing my train of thought, and that is not much of a problem this past week.

From what I've seen, it's going to take 1-6 months for the LDN to really turn around the whole autoimmune process, but if it really turns it around and getes my body to stop attacking itself (and does so without side effects and causing weight gain, mood swings, hair loss and serious illnesses such as diabetes and osteoporosis, a la prednisone) then it will have been worth having to give up my sure-fire narcotic pain relief short-term to just not have pain long-term.

update 11/30: i upped my dose from 2.0 to 3.0 tonight. I was in constant pain all weekend, all around my upper body, which I think I've traced to having carried my guitar around in a gig bag on my back both Friday and Saturday. The cold air is also not agreeing with my lungs- my chest feels really tight.

I overheard some guy tonight blabbing about how he lost a bunch of weight by just going jogging twice a week. he seemed to believe that anyone could lose weight that easily. it made me really mad, because he put out so little effort and almost painlessly met his goal. I feel like i make so many changes and sacrifices and sometimes don't see any results, and just have to keep giving up more and more and more things - first no overexertion and no sunshine, then no soda; then, no bread, no lunchmeat, no dairy. And still my numbers are terrible and I'm in constant pain. And now, no painkillers. What's next, no smiling? i shouldn't have to work this hard to feel normal! what the hell went WRONG?! OK, just had to rant for a minute. Makes me crazy when healthy people take their well-being for granted and they can't imagine why everyone else can't just go jogging and have the weight fall off, or lose 2 pounds every morning by peeing, or drink a red bull and power through it all.

Anyhow my current idea about what to do next if the LDN doesn't start showing results ASAP is to do a Candida cleanse (this is strongly encouraged by those who know about LDN)- meaning give up EVEN MORE foods (temporarily), including all sugar, even fruits, take some herbs, and kill off the yeast in my gut. Yeast overgrows if 1) you eat/ drink too much sugar 2) your immune system is compromised by stress or immune suppressants, such as prednisone and cellcept, which i've taken 3) anitbiotics. I did the candida diet both the other times I took prednisone, in 1994 and 2002, but haven't done it since the 2006 hospital stay/ year-long prednisone usage. Dreading the cleanse, feel like I've already sacrificed enough by going vegan and gluten free and giving up diet soda and giving up my narcotics and being in pain for the last 2 weeks, but i absolutely must get to the bottom of this thing, or i'm going to end up even worse off - back on prednisone, moonfaced and hairless, biding my time til my turn on the gurney, lining up to have my bones replaced after the drug eats them away.

update 12/3 (Day 17 on LDN): I'm now taking 4.5 mg a night. well turns out some of that shoulder pain was caused by carrying around the guitar on my back. I know that because that alone has cost me enduring days of shoulder pain before. And also now that my "Aunt Flow" is here, 3 days early , as usual (If she's always early then I guess early is the new "on time" for me), I am starting to get some relief from the pain. Also aided by icy hot, my husband giving me several back rubs, and me doing chi gung, and doing tons of shoulder rolls. I also listen to relaxation tapes when I go to bed, and try to breathe *into* the pain and tightness, instead of breathing shallowly to avoid pain. It's hard for me to measure how anything else is doing in regards to the LDN - the pain kind of swallows up awareness of anything else. I've been staying up til 5am because i can't stand going to bed when I hurt. Turning off all the lights and distractions and lying down and putting weight on my hurting shoulders just magnifies the whole thing 100-fold. But I do seem to be less forgetful and mentally foggy. Once the pain completely dissipates I'll have more perspective on everything else.

update 12/10 (day 24 on LDN): After seeing the acupuncturist last week, I now know that the shoulder pain I've been blaming on lupus and fibro is probably caused by playing guitar. I had a great acup. treatment with needles, TENS unit and cupping. It got rid of 80-90% of the pain. Hubby continues to give me back rubs to keep it under control, and I got another treatment today. Dr Wu (my acupuncturist) asked me for my lab results so she can make a case study of me. She has completely turned around the health of people with lupus before. I'd like to be in that company. Meanwhile I've been able to cut my sleep med in half since starting LDN. Which means I'm less groggy and less brain foggy. I continue to stay gluten-free, vegan, and no aspartame (diet soda, or anything else with nutrasweet). I also added taking liquid vitamin D to the mix, as most Americans have vit D deficiency, and it is linked to autoimmunity. Normally you get your vit D from the sun, and people with lupus have to avoid the sun. So you'd think that we would be ordered to take vit D, wouldn't you? Too obvious?

Also, someone suggested that since LDN is supposed to be taken in sync with your biorhythms, between 9pm and 2am, that we should account for dalylight savings time. So that means to take it between 8pm and 1am. I've set an alarm on my digital watch to make sure I take it before 1am each night (I'm still a nightowl).

When I get better (not if, but when, because I've done it before) it may be hard to trace it to one thing, because I'm doing acupuncture, taking vit D, changed my diet and started LDN. However, I went gluten free 1 year before starting LDN, and gave up nutrasweet 2 years before. I went vegan 2 months before, and before starting LDN, after all those changes, my numbers were not improving. I always need more than just diet. Diet and acupuncture alone would do it, and did it before. But then I got sick as soon as I hit immune challenges (mold exposure, stress). Therefore I'm combining the 2 things that worked before, plus LDN and vit D, in hopes that I'll get better faster and stay better longer. I'm feeling very positive about this path.

update 12/13: shoulder pain is back, kept me up most of the night. used ibuprofen gel, heating pad, suction cup massager, helped long enough to fall asleep, but not all night. I seem to need a massage every few hours. Of course this attack was brought to you courtesy of driving 500 miles and playing 2 shows in the course of 24 hours. Meanwhile (knock on wood) It's been a while since I've had to take anything for a headache and I don't seem to be having pain anywhere else (such as elbows, knees, ankles, fingers, which often swell and hurt when the disease is active). And my, um, bathroom results are back to normal (had a few days of- let's call it "doing number 3").

update 12/20: shoulder pain still bugging me. About every 3rd night I get some deep sleep. other nights, I feel like i never really fall asleep, just because of the pain. So it's still hard to tell how I'm doing otherwise. Just spent 3 days in puerto rico thawing out and swimming (wore my 50 SPF shirt when in the sun; i'm not a fan of sunscreen because of the chemicals, although i have some organic sunscreen that I used on my face and hands). last week i started taking oil of oregano 2-3 times a day to kill off the candida problem, which surfaced last week, a few weeks after starting the LDN- I hear that is not uncommon, and that it can be hard ot make much progress until the candida is under control. Keepin the faith! I got all my tests to go negative (in the positive sense ) last year; I know I can do it again.

update 12/28: shoulder pain, unrelenting. using massage, ibuprofen gel, TENS unit, chi gung, and sleeping on couch where i can prop up so it hurts less. had some headaches and stiff swollen fingers and toes over xmas for 1-2 days. Still taking the anti-candida stuff (oil of oregano). Athlete's foot has resurfaced on left foot, probably connected to the candida resurfacing. Some say the LDN will bring the candida problem to the surface. I now have LDN pills as well as liquid. I prefer the liquid because pills stick in my throat and take a while to get into your system. And the liquid is cheaper if you buy the 50mg pills and dilute it yourself. But I prefer to travel with pills since the liquid has to be refrigerated and i never know if the airport security is going to take away the liquid, leaving me with no medicine for the length of a trip. I am very conscious of that fact that if I want to heal I need to slow down and rest more, do less. The cold weather is not helping matters, so i'm trying to hide indoors as much as possible. Every now and then i'm tempted to take a narcotic but to do so I'd have to quit the LDN and I'm not going to quit it until i see whether it has improved my blood tests. I have to give it a chance to work. Next tests: around Jan. 11.

update: I ended up going off the LDN so I could take percocet for the pain I was in. My LDN experiment was worthwhile, but I can only stay in constant pain for so long . I have heard testimony that LDN has been successful with other lupus patients but I also have uncontrolled fibromyalgia. I'm currently on cymbalta which is controlling it to a degree, but occasionally i have to take a half a percocet. I told several people about LDN. One of them has MS and she improved dramatically. So I do not dismiss it as an effective treatment for some people with autoimmune diseases. A nice cheap non-toxic one at that.