Wednesday, December 19, 2012

Come Back When You're Sicker

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?

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.

Another progressive, nutrition oriented MD is Dr. Joel Fuhrman ( 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

_____________ performance  info and dates - 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!

Thursday, December 13, 2012

Growing Back that Gorgeous Head of Hair

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

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

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

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

Any insight?
(name deleted)

hi there-

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

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

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

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

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

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

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

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

Here's an article by Dr Mark Hyman that I like very much- 9 steps to heal autoimmune disease:

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

Carla Ulbrich
The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________ performance  info and dates - funny songs
get Carla's book!

Sunday, December 9, 2012

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.

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 , or have a look at my blog .

I wish you both all the best-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________ - performance  info and dates - 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!

Monday, December 3, 2012

The End of Chronic Pain

For 20 years now I've had unexplained chronic pain in my upper body. It's been there when the autoimmune stuff is flared up, and it's been there when it's not, even when all my "lupus tests" are negative.

(Note: there's really no such thing as a specific "lupus test," but there are tests that show antibodies that are loosely linked to lupus and used as one part of deciding on a lupus diagnosis. You can have lupus even though your tests appear normal, and you can have abnormal tests and not have lupus... so they aren't the be-all and end-all for diagnosis. However, in my case, when I've been very sick, my tests were very abnormal- so, for me, a bad test just confirmed what we already knew- the lupus/autoimmune stuff was in high gear.)

But let's get back to the issue at hand: chronic pain that has no explanation.
I've tried everything under the sun to eliminate this pain.

- Chiropractic. Went 3 days a week for a month, and the pain always returned within a few hours. He told me my neck was out of alignment, but the adjustments only made me feel better for such a short period of time.

- Acupuncture. helpful for other things, but not so much the shoulder pain. Still, no real explanation for the pain.

- "regular" medicine (rhuematologists, neurologists, GP, etc). Here I got drugs (advil, Aleve, aspirin, Saulsalate, percocet, vicodin) and pain creams and patches (biofreeze, icy hot, arnica, salonpas) (I'm sure I'm forgetting some- I've been at this for 20 years...). Sometimes I've taken so much percocet it made me hypothermic (because of all the tylenol in it), and the pain was... still there. And not to mention the constipation. Oh, I just mentioned it, didn't I? And of course, no closer to knowing why I was in pain. I just used the drugs to help manage it.

- a TENS unit (electrical stimulation). I also used this for much longer periods than suggested. Gave some relief, but only while it was on. And still no explanation for the pain.

- Heating pads and ice packs.

- Massage. this actually really helped- if i could get massage every DAY! Maybe if I were super rich and famous... Which led me to think ... muscle tension is behind this. But why so much tension?

-Physical therapy. Did this for 6 months. Thought I had found the "source" of pain- tendinitis in my right arm. So we worked on that for 6 months, 2-3 times a week. Every session, I got heat for 10 minutes, then massage for 10 minutes, then exercise for 15-20 minutes, then ice for 10 minutes. Sometimes I couldn't make it to an appointment because I was out of town, but I would continue to do my exercises at home/ on the road. But the pain would return. So... the exercises were not eliminating the pain. And I would heat and ice myself. Not enough. Clearly it was the frequent massage keeping things under control. That's what I learned from 6 months in PT. Something I kinda already knew- massage helps me more than anything. Unfortunately, the amount of massage it takes for me to be pain-free (3 times a week) is more than I have time or money for. But I did still want to get some massage, even if I can't go 3 times a week.

Sidebar: having the diagnosis "tendinitis" still doesn't give an explanation as to where the pain came from. It's just another label for my problems, but it doesn't tell me WHY I'm in pain. I was also told I had "adhesions," those things I call "crunchies" in my shoulder and back muscles, that feel like big lumps of salt that I can break up and dissolve if I work at it, or have someone else work at it (massage). OK, I have a new word: adhesions. But WHY do I have adhesions? It's kind of that circular logic: Why do I feel like crap? Because you're you're sick. Why am I sick? Because that's the label we give you when you feel like crap. Wow, thanks. What do I owe you for this bit of wisdom?

While my "why?" remained unanswered, I at least had a "how"- as in, how to get some relief: massage. I made numerous attempts to find a decent massage therapist (FYI, in New Jersey, you don't have to be licensed! Any schmo can put up a sign and sell massages!). Massage has become very popular around here as a business with people who just arrived here from China and the only English they know is "30 or 60 minute?" and "cash or credit card?" I had some AWFUL massages. One was so pointy, I think all she used were her thumbs. It felt like I was being walked on by a 30-pound cat wearing high heels. Now I know why they made me pay in advance.

Finally, I found Massage Envy, a national chain, and all their therapists are licensed and speak great English. Why do I care if they speak English? Because I need to tell them not to work on my upper arms because they bruise, but work hard on my back, and please don't yank down my underwear and leave my butt flapping in the breeze. Furthermore, I would prefer that you not get on the table and straddle me to get at my back muscles... especially while my butt is flapping in the breeze... etc."

Also, at Massage Envy, sometimes you get someone like my new favorite person, Michelle, who has further qualifications and works in physical therapy. She, after 20 years of no answers, traced the pain in my shoulders and arms to my neck. My neck doesn't bother me, but as she worked on it, I felt "referred pain" in my arms. Ah, so the pain in my arms is starting in my neck. Getting warmer. (For all this time, I've been wanting to get to the bottom of this, to know where the pain was coming from, and to put an end to it!)

"So this is starting in the neck- why is my neck so tight?" I asked myself and the universe. for starters, I've been watching TV from a loveseat that is at a 90 degree angle from the TV. So, I watch with my neck turned. I stopped that. I didn't notice huge improvements, but there's certainly no argument to be made in favor of such a habit.

Then, one night I was watching TV and in the dialogue someone said to their coworker "Are you a clencher? I can see you're a clencher." Meaning, do you clench your jaw habitually? Why yes I do. I already know I'm a tooth grinder when I'm asleep, but I've also noticed that if I open my jaw throughout the day it makes this awful crunching sound like someone crinkling plastic bags. If I wiggle my jaw around a bit, it will loosen up and stop making that sound.

So for the last few days I've been checking my jaw every 5-10 minutes and loosening it back up until it stops "crunching." Oh yeah and I altogether gave up chewing gum, one of my long-standing vices. I had switched to a "healthier" gum that has no aspartame, but I realized the constant chomping when I have neck pain and jaw tension is... well, stupid.

Maybe it's coincidence, but I haven't needed pain meds for the last 4 nights in a row. No percocet, no advil, not even aspirin. No pain creams, no heating pad, no TENS unit, no asking my husband to rub my shoulders to get the "crunchies" (adhesions) out. Could it be my healing answer came to me in the form of a rerun episode of "Crossing Jordan?" Well, it *is* a detective show...

I hope to report back to you in a week, a month and a year to say, "oh yes, that's all behind me now. I'm clench-free and pain-free still! Can you believe I suffered for 20 years and no one ever said 'Hey! unclench your jaw!'"

Here's something that backs up my theory of where my pain really comes from:
"When teeth are held together or the jaw is held tense over a period of time such as when concentrating, the facial and neck muscles become fatigued and painful. Morning and afternoon headaches, difficulty chewing, neck pain, and sore facial muscles are the most common reported symptoms. When clenching becomes chronic such as day and night, many severe muscle related symptoms can occur that can have dramatic effects on a patient's quality of life. This leads to a painful muscle condition called myofascial pain syndrome."from

If you look up myofascial pain symdrome, it sounds a lot like fibromyalgia, something I was diagnosed with at one point.

I know a number of you who read this blog also experience chronic pain. It's draining. It saps you of energy, joy and sleep. If you suspect you're a chronic clencher, the only way to know is to unclench so you know what that feels like, because clenched feels "normal" to you.try it- open your jaw wide (don't force it), like a surprised ventriloquist dummy and see if you hear any "crunching" or feel any resistance when you do it.

If something here resonated with you, maybe you are a clencher too. Are you? It's just a habit, and habits can be undone!

Well wishes and clench-free jaws-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________ performance  info and dates - 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!

Tuesday, November 27, 2012

Lupus and sleep

Does lupus cause extreme need for sleep?

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

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

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

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

(Thoughts on sleep, anyone? Comment below!)

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________ - performance  info and dates - 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!

Wednesday, November 21, 2012

The ANA Test and SLE lupus

The ANA test. It is the antinuclear antibody test. Though it is used to help diagnose someone with lupus, it is not a definitive "lupus test." Read below of an e mail I received from someone who is trying to get a definite lupus diagnosis (a very frustrating place to be), and has put a lot of stock in getting a positive ANA test result (positive ANA test result would go in the "might have lupus" column, but negative ANA result does not rule lupus out). I have added in explanations for all the abbreviations, since I know now everyone who reads this knows the medical lingo.

Dear Carla,

I have been being treated for SLE {lupus}/MTCD {Multiple connective tissue disorder } for about 4 yrs. I've had DVT {deep vein thrombosis}, PAH {Pulmonary arterial hypertension}, spilling protein, Anemia, low white blood cells, low RBC {red blood count}, low hemocrit {iron deficiency}, low vitamin D, high CRP {C-reactive protein, indicates inflammation}, c3/c4 complements {protein linked with immune activity} mildly elevated, high sed rates {indicates inflammation} in the hundreds {that is extremely high}, etc. - all the symptoms you can imagine, but always a negative ANA. 

The entire time I've been on many medications from prednisone, methotrexate, to now placquenil for the last 2-3 years about. My Dr. has ordered another ANA panel. I just want a definite answer. I don't believe any one can cause a ANA positive test but I do believe my medicine probably controls it and my flares. So I want a true diagnosis. Should I stop my medicine before taking this test again? wait till I'm in a bad flare? Is having the test done on one of my bad days enough, or should I sit in the sun as crazy as it sounded? No, I don't want to be sick either! God knows I've suffered enough! But I just want a real answer. It seems to me that I'm tittering and the Dr. is not sure what I have. If doing something will make me ill but give serenity in knowing the truth I need to know, I'm going out of my mind! Thank you for listening and hopefully you can give me some insight.
- name withheld

Hi (name withheld)-
I know how frustrating it is to not have a definite diagnosis.
It took me 2 years of visiting bunches of doctors before I was finally diagnosed with lupus.
I did have positive ANA at the time. But here's the thing about that ANA test. It is not a perfect, specific yes/ no "lupus test."

You can have a positive ANA and *not* have lupus. You can have a negative ANA and yes, have lupus. The fact that there is not one test for lupus is one of the reasons it is so hard to diagnose. Lupus is diagnosed with a combination of tests and symptoms (past and present). One big red flag is inflammation and you certainly seem to have that. You may find this article helpful:

I had severe lupus and have been able to turn it around with diet and lifestyle changes. In fact, my ANA tests are now negative.

I would like to strongly encourage you to NOT try to make yourself sicker so you can get a definite answer. I understand why you want that answer once and for all, but I'm not sure you can get sick enough to get the answers you want.

Whenever I'm being told to go get a test, I always want to know what will change once the results come back? (Some tests are just unnecessary and expensive). What if you go sit in the sun, stop your medications, send yourself into organ failure and your ANA test still comes out negative? And what if it comes out positive? Well best case scenario is now you are very very sick and they still may hesitate to call it lupus. For some reason, they just don't like to hand out that diagnosis. But if they did call it lupus the only thing that would change is your having a label for it. The medications would be exactly the same.

I understand it's frustrating. I truly do. You are not alone. It routinely takes people (mostly women, mostly being told they are crazy or hypochondriacs while they are suffering) 2-5 years to get diagnosed with something like lupus. I was so frustrated by my chasing a diagnosis for 2 years that I just broke down and desperately prayed to God for a correct diagnosis. I was diagnosed the next day.

My suggestions to you (besides trying a desperate plea to God) is to just assume you have lupus, or something autoimmune and serious, or MCTD which is in my opinion lupus by another name. They are treating you for lupus, judging by the drugs they are giving you.

Instead of trying to get sick enough to finally get that answer you deserve, consider turning it around and thinking about how to get healthy again, reclaiming your health and leaving all this medical mess behind you. That may sounds crazy, but it's possible. If you'd like to read a bit about more about what I do to stay healthy, here is my blog

All my best-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________ performance  info and dates - funny songs Carla's book

Saturday, November 17, 2012

Can Lupus Cause Hepatitis?

I'd like to share with you a reply I wrote to a woman who sent an inquiry to

Dear Allexperts-
I was diagnosed back in 1992 with Lupus SLE. They tested me for ANA and other test because my white blood cell count was very low...that is when they told me I had Lupus. Now, stupidly I disregarded their diagnosis and never went on any meds. I was 29 at that time. Well Just this past Monday I went in for blood work and they tested me for ANA again and within a days time I was told the test were negative. Yet they want me to come in for more testing because my liver function test came back that my liver is not functioning well. Now I have been experiencing , nausea,vomiting, pain in upper right abdomen...lower back pain...low grade cholestrol levels are very high...they want me on low-fat no salt diet...I have been diagnosed with pleurisy...high blood scalp itches all the time and not from dandruff ...I have sores that have scarred over on my chest that were once pus-filled and burst and bled and scarred my skin area there. My vision is very blurry...I suffer from confusion and dizziness...joint pains...swollen abdomen...incontinence...well enough of that...Can one test negative for ANA after having tested positve? Does Lupus affect the liver and cause hepatitis??? What other test can be done to firmly establish that one has LUPUS? And how long does it usually take to get the results back from ANA TEST ?? Any help would be greatly appreciated..Thank YOU :)

Hello (name omitted)-
Thank you for writing.
It sounds like you have a lot of inflammation going on, and certainly a lot of probable autoimmune activity, and a number of the things you mention could be caused by lupus, such as the sores, the blood pressure, the pleurisy.

I have had all these and was definitively diagnosed with SLE lupus.

Unfortunately there is not one definitive lupus test. Lupus is diagnosed using a combination of blood tests and symptoms. Because there is no ONE lupus test, it unfortunately can take a long time for people to be diagnosed with lupus. Yes you can have positive ANA and not have lupus, and you can have negative ANA and actually have lupus. The ANA test is just one piece of the puzzle.

Lupus can affect any organ. Lupus is inflammation of the connective tissues around the organs and joints. I have had lupus affect my brain, lungs, kidneys, digestive tract, and joints. In answer to your question, yes you can develop autoimmune hepatitis. You may find this helpful:

I do believe the hepatitis is reversible, however. And lupus is too. The regular literature will tell you it is not, but I, and numerous others have reversed or effectively managed lupus using natural means.

I would like to encourage you not to beat yourself up for not having been on medication all this time. Yes, it is important to keep getting regular blood tests to keep an eye on things like inflammation and organ function, and to get treated if things are serious.

It is not, in my opinion, necessary to always be on drugs if you have a lupus diagnosis. I manage my case of lupus with diet. I am on a gluten-free dairy-free, egg-free, no nutrasweet diet (I found out my food sensitivities with a delayed food allergy blood test). I now eat a lot of leafy greens and take a high-quality multivitamin (from Dr. Mercola). My lupus tests have all turned negative since doing this, and I have gone from being on 9 drugs to just being on a blood pressure medication. So, you have other options besides just taking medications. I would encourage you to get blood tests every few months, regardless of which route you choose- taking pills, changing your diet, or both (I was doing both, and gradually, carefully weaned off the medications as i got better).

Well wishes-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________ performance  info and dates - 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!

Thursday, November 1, 2012

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 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:

Here's the wikipedia page:

As always, in the spirit of wellness-

Thursday, October 11, 2012

Sharing Your Experience, Strength and Hope with Others

I'm a contributor to the website 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 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):

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

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 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

_____________ performance  info and dates - 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!

Thursday, October 4, 2012

Guest post: Eye health
Today we've got a guest post from Emily Joseph on eye health.

This is a topic of interest to me because I, like many people with autoimmune diseases, have Sjogren's symptoms (Sjogren's causes very dry eyes and mouth) and lately my nearsightedness seems to be worse, and, oddly, I can't read my iphone screen unless I take my glasses off. These are minor inconveniences, but I am concerned about any loss of vision, because loss of vision means loss of independence.  Please chime in, in the comments section, with your thoughts and experiences.

Lifestyle and Diet Tips to Keep Your Eyes Healthy

We go out of our way to try to keep our waistlines trim, our skin looking good, and our hair shiny and smooth, but not very many people think about one of the most important parts of their body - their eyes!

Other than those people who grow up with eye problems that require glasses or contacts, the vast majority of us barely think about our eyes even though we use them every day as our primary way to interact with the world. We know that eye problems can develop over time, but no one ever mentions that it might be possible to prevent or slow down some of the ways that our eyes can start to break down on us as we get older by eating better and living smarter.

It's true! Things like cataracts and macular degeneration can be slowed, and some diseases - like diabetic retinopathy - are directly related to poor eating habits. So if you want to keep yourself clear eyed and ready to face the world for as long as possible, try following these tips.

Give those peepers the nutrients they need. That means plenty of leafy greens, fruits - especially citrus fruits, oily fish like tuna and salmon, and protein that doesn't just come from meat (e.g. nuts, beans, eggs, and so on). Why these foods? Because they're high in the things your eyes crave: zinc, lutein, zeathaxin, vitamins E and C, and omega-3 fatty acids.

Wear sunglasses. We all know that UV rays from the sun are dangerous. Heck, many of us lather up our bodies in ridiculous amounts of sunscreen even if we're just walking down the block. So if you're going to be that careful with your skin, why wouldn't you do so with your eyes? Good sunglasses can block both UVA and UVB rays, and should even be worn by people who have UV contact lenses because the glasses will protect your sensitive eyelids as well.

Just say no to nicotine. As if smokers didn't have enough problems, here's another one: smoking has been linked to things like damage to your optic nerves, cataracts, and macular degeneration. On the flip side, having healthier eyes is yet another benefit that you'll get by finally managing to quit and stay tobacco-free.

Stay fit. Eating a healthier diet should help with this, but it's important to exercise as well. Why? Because fatty tissue itself might actually be harming your eyes if you have too much of it because it can soak up nutrients that would otherwise go to protecting your eyes.

Keep your blood pressure down. The American Academy of Ophthalmology says that macular degeneration is more likely to occur in people with high blood pressure. There's no definitive reason why, but many experts believe that blood vessels can be damaged when there is too much pressure in the body, which would make it harder to get blood to flow to your eyes. Less blood means that free-radical debris will stay in your eyes longer and it will be more difficult for them to get the nutrients they need.

Use protective glasses. Obviously you can't see if you poke your eyes out or allow some kind of damaging material to fly into them, so always make sure that you use protective glasses when working in any kind of environment where your eyes could be put in danger.

About the Author: Emily Joseph has been covering eye care topics including laser eye surgery for over a decade. When she isn’t writing, you can find her spending time at home or training for her upcoming triathlon.
About the blog host: Carla Ulbrich is The Singing Patient, a medical musical comedian who performs for patients, caregivers, healthcare workers, and even "earth people." She is frequently heard on Dr. Demento and Sirius XM's Laugh USA.

Thursday, September 6, 2012

Benefits of Laughter

As many of you know, I'm an afficianado of laughter. I love to both partake of a good laugh and help others do the same at every possible opportunity. I love to laugh. I always have. It's one of my "vices." I also love chocolate. And I love staying up until 5am. And I love gambling. But thankfully, laughter has none of the consequences of my other vices. I've never blown $70 at a laughter table in Atlantic City, laughter doesn't give me zits or make me gain weight, and having a good laugh doesn't leave me sleep-deprived. Au contraire, my friends.

Laughter is rife with wonderful health benefits. It is a "vice" that actually makes my life better. In fact I only call it a "vice" in jest, as it is actually a virtue. But if I call laughter a virtue, we won't want to do it... :)

What's really therapeutic is when I can laugh at my troubles. It really puts them in their place. It gives me back my power. Many of you have read my book or heard my Sick Humor CD and you know that is what a lot of my writing is about- taking back the power by finding the funny in the pain. For example:

But often, I need some time to pass before I can joke about something that is causing me anxiety or frustration. In those times, I laugh at something else. For example, when my husband was under a tremendous amount of stress this past spring, and there was nothing left for me to say that would help, I would sometimes ask if I could turn on some standup comedy while we were in the car. I chose comedians who were light, and not sarcastic or negative (we both love Mitch Hedberg, for one). Over time, as things improved, we were able to joke about his actual situation too.

But you don't have to have comedy to laugh. Laughter clubs all over the world use laughter exercises. They just laugh at nothing! Thanks to for this great infographic on laughter benefits. It relates the benefits to stress reduction. But laughter can also be helpful in prevention, not just cure. True health is about maintaining a state of wholeness, joy, and radiant being. What makes you laugh? When was the last time you laughed so hard you thought you'd wet your pants? Where do you get your funny? Wishing you a laugh-filled day-

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

  Laughter Infographic

Thursday, July 19, 2012

guest post: diet that prevents cancer

Today we have a guest post from Jillian McKee on cancer prevention through diet.

Now I know that most of us with lupus do not have cancer, although it is possible to end up with both. And in fact, most of us with an autoimmune disease have more than one autoimmune diagnosis and we all (all of us in the modern world) have risk of cancer.


When I was first diagnosed in 1993, there was no internet (not for the public anyway) and little to nothing in terms of books and options, even in the world of complementary medicine, for lupus. Everything I did find that seemed promising seemed to contain the specific warning "contraindicated for systemic lupus" (AUGH!). 


I found I often just wound up reading books aimed at cancer patients and then adapting that info to fit my situation. After all, healthy food is healthy food, and a healthy mindset is a healthy mindset, right? Well, mostly yes. There are some things that work for almost everyone, like get enough rest, eat real food (not junk), drink water, and have happy thoughts.

So, even though this is a "cancer" post, some of this info may be of help to you. As with all blog posts, take what you need and leave the rest. And here we go:

A Healthy Diet Can Help Prevent Cancer

According to the National Cancer Institute, 35 percent of cancer-related illnesses are linked to malnutrition. When the body is not receiving proper nutrients, the immune system cannot fight free radicals and other carcinogens. When the body is under stress or ingests harmful substances, the risk of cancer increases. Cancer patients should improve their nutrition to prevent cancer and reduce the risk its spreading throughout the body.

If smoking and a sedentary lifestyle are also accompanying a poor diet, cancer risk can be as high as 85 percent. Cancer patients must constantly monitor what they eat. Diet not only affects physical health, but also affects our energy levels, self-esteem, and mood. Cancer patients must make positive choices to refrain from exacerbating their condition. Treatments for mesothelioma and others cancers can cause side effects, which can be alleviated through a healthy diet.

What Is Recommended?
In general, patients should select foods that are high in fiber, vitamin C, omega-3s and lycopene. Each plays a role in fighting free radicals known for causing cancer.

Green leafy vegetables, for instance, are high in fiber. Fiber reduces “colon transit time” and reduces the time that any carcinogens are in contact with the colon wall. With carcinogens leaving the body, friendly bacteria can easily replace harmful bacteria in the body. Americans should eat between 25 to 35 grams of fiber per day, but most only eat 10 grams. Though leafy green vegetables are a common source of fiber, fruits, beans, nuts, seeds, pastas, whole grain cereals and breads are also recommended. Fiber should be included in a healthy diet.

Fish high in oils are rich in omega-3 fatty acids. Salmon, tuna, halibut, herring and mackerel are all great choices that should be consumed three times each week. Polyunsaturated fatty acids such as DHA and EPA play a role in cancer prevention. Berries, brussel sprouts, and mushrooms are also good sources of these acids.

Antioxidants, anti-carcinogens, and bioflavonoids each are beneficial in preventing cancer. Foods rich in phytonutrients include dark green leafy vegetables, berries, legumes, citrus fruits and whole grains.

Soy protein is recommended for those at risk of breast and prostate cancer. Soy also contains phytonutrients that fight hormone-sensitive cancers. Genistein, daidzein, Bowman Birk inhibitor, and lecithin all play a role in the cancer fighting process.

Cancer patients should select foods based on the 80:20 rule. Eighty percent of food items selected should be from the plant kingdom and 20 percent from the animal kingdom. Patients who adhere to this rule are generally healthier.

Bringing a wealth of personal and professional experience to the organization, Jillian McKee has worked as the Complementary Medicine Advocate at the Mesothelioma Cancer Alliance since June of 2009. Jillian spends most her time on outreach efforts and spreading information about the integration of complementary and alternative medicine when used in conjunction with traditional cancer treatment.

Tuesday, June 5, 2012

guest post: helpful tips on living with lupus

Today we have a guest post from author and lupus veteran (26 years and counting!) Mida Giragosian. I'm always interested in the insights of people who have lived with lupus (or any disease) for a long time. 26 years with a chronic illness will most certainly teach you something.

Here is her post:

Hi, my name is Mida Giragosian.

I was diagnosed with Lupus at the age of 21, and now I’m 47. Yes, I had a lot of life-changing problems in between those years, but now I look, feel, and sound better. We can all help each other get through hard times. I lived by these tips:

·      Live by FAITH, one day at a time

·      Write down things that make you happy. The list can motivate you every time you look at it

·      Always dress up as if you’re going to a party. If you look good, you feel good
More tips can be found in my book, but it is most important to wake up every day and to remind yourself: I WILL OVERCOME. Remember that everyday is a blessing, and that your disease does not define YOU!

For more information you can visit:
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What are your thoughts on these tips? And if you were to boil down your own lupus/ wellness wisdom to a few sentences, what advice you would give to other people dealing with lupus? What helpful tips would you offer them?

Leave your comments below!

'Til next post-

Carla Ulbrich
The Singing Patient - humorous speaker, songwriter, and author

Thursday, April 12, 2012

Guest blogger: Eat to Beat Inflammation and Pain

Today we have a guest blogger, Katie Brind’Amour, on the topic of anti-inflammatory foods.

Eat to Beat Inflammation and Pain
Let’s be honest – swollen joints and aching muscles just plain suck. Modern medicine has a host of helpful treatments for these ailments, but so does Mother Nature. Try chowing down on some of the foods below to reduce inflammation and ease joint and muscle pain, particularly if you suffer from lupus.
Fab Foods to the Rescue
Eat your vegetables and whole grains. Vegetables and whole grains (like brown rice, whole wheat, quinoa, and other grains) can offer a host of antioxidants and nutrients that can help your body fight fatigue and inflammation. In addition, the Vitamin E that naturally occurs in some veggies (like tomatoes, spinach, carrots, and sweet potatoes) may help reduce pain, protect your eyes, and heal weak or damaged skin.
Add some (healthy) fat to your meals. Omega-3 fatty acids are widely touted for their ability to cure just about everyone of everything. What you should care about, though, is that omega-3 fatty acids – like the ones found in fish, olive oil, nuts, and avocados – help reduce morning stiffness, joint pain, and functional limitations in individuals with inflammation caused by an autoimmune disorder.
Snack on nuts and seeds. Nuts and seeds are a powerhouse combination of healthy fats, essential nutrients, and powerful antioxidants that will help fight tissue damage, boost energy, and even reduce swelling or pain. Incorporate a small handful of walnuts, pumpkin seeds, or your favorite nut butter into your daily routine for the most benefit.
Don’t forget your dairy. The calcium in milk, cheese, yogurts, and green leafy vegetables (yes, I know they aren’t dairy) can help promote bone health and prevent osteoporosis, which is good news if you suffer from joint pain, bone deterioration, or skeletal weakness. {note: many people with lupus, including me, fare better on a gluten-free, dairy-free diet- Carla}
Bring some citrus into your diet. Early research in animals shows that citrus peels and extracts may significantly reduce swelling and pain (perhaps even better than morphine, which is saying something!). Even if this doesn’t have equally significant effects in humans, it can’t hurt to get some extra vitamin C and antioxidants in the diet.
Watch sodium intake. If you suffer from inflammation or swollen joints because of retained water, sodium may be your enemy. Try cutting back on processed foods like lunch meats, frozen dinners, and canned soups while simultaneously drinking more water – the combination should ease pain and swelling if sodium was aggravating your symptoms.
Make Anti-Inflammatory Foods Part of Your Routine
Try keeping a list of these foods near your refrigerator or in your wallet to remind you about the easy ways to incorporate natural pain management and anti-inflammatory treatment into your diet. After all, everybody eats (I hope), and simply making some trades or tweaks ought to start relieving some pain and inflammation in a few days to weeks.
If you are even more eager to put your new dietary savvy to the test, try keeping a food diary to track what you eat and the type and severity of symptoms you experience. Then discuss the journal with a physician or dietitian to brainstorm on other potential changes you can make to help get the most out of your food (and potentially avoid some unpleasant symptoms).
If you have chronic pain or inflammation, you owe it to yourself to try a few natural treatments for symptoms of lupus or other auto-immune disorders. You may find that personalizing your diet is the key to making your disease more manageable day to day, improving both your short- and long-term health and functional abilities in the meantime. Eat up!
Katie Brind’Amour is a Certified Health Education Specialist and freelance health and wellness writer. She enjoys blogging about friendship and life in the not-so-fast lane while chipping away at her PhD in Health Services Management.

Thanks, Katie, for the great post! I always love to hear about natural ways to decrease inflammation and improve health, especially low-cost practical ways, like adding in new foods. There are lots of great suggestions here. I would only advise caution to people with lupus in regards to dairy. In my personal experience, my inflammation would not let up until I eliminated dairy. For me, and many people with autoimmune disorders, it is an aggravating food. Otherwise, I have to agree with the overall approach to using food to reduce inflammation, because using drugs to control it, over the long-term, can lead to other problems, some of them quite serious. Food journaling is a great tool, and I especially like your tip of keeping a list of good anti-inflammatory foods handy, on the fridge and in the wallet. A helpful hint for implementing these tasty healthy ideas. Thanks again!
Carla Ulbrich, The Singing Patient - health coaching- visit this site to get a free e book on nutrition! funny medical songs

Friday, April 6, 2012


The other day I went to a lupus support group to speak and sing and share, as they say in 12-step, my experience, strength, and hope.

There was one person in the meeting who was in a really tough place, and had got to the point where she was paranoid that wherever she went, people were going to lock her up just for being too sad. Of course she's sad- she has lupus, it's bad right now, and she is getting no support at home. And being in the Bronx, going to a clinic, they really might have locked her in a psych ward. Unfortunately, there is financial incentive for them to do so. But as we listened to her, it also became clear that she was working herself into a frenzy.

I've been there. When everywhere you turn, people are just sending you to voicemail, or telling you they have their own problems, or shoving you off onto someone else, it's very easy to have no hope and to get stuck. But this is the time when it's most important to find hope- when there seems to be none.

If you are fortunate enough to have friends (or even pets) who will love you unconditionally until you are past the crisis, you are blessed. Not all of us do. And even if you do, it's very important that you rely not just on them for your hope and your smiles and your motivation, but to find it from within.

Even the best of friends can't be there 24/7 and they can't crawl inside your head and battle those thoughts and feelings for you. That part of the battle, you must do on your own. And if you do not get up and fight, eventually you will drain the resources of those around you, and you will still be stuck.

I remember when I was very ill 10 years ago, I was listening to a friend tell me about this awful thing that happened 7 years before. She was so upset. I held her hand and listened. And then a few weeks later, she told me the story all over again, and I listened again. Now remember, here I am on 9 drugs, just had a stroke, can't get up and down one stair, so I'm trapped in the house, and I'm up most of the night because of neuropathy (nerve pain); I'm on medicaid, so I'm spending most of every day in a waiting room, waiting 2-4 hours for my appointment.

I had problems. We all have problems. But she was upset, so I listened. Until the 3rd time. By then I had watched her tell this story over and over to anyone who would listen. I realized she wasn't looking to solve them; she was just staying stuck, and anyone who listened was investing their energy and compassion, but making no difference, because she was stuck and would not do anything for herself.

That third time she started to launch into the same story, I said, "Listen. Do you think I like being on 9 drugs, with diuretics that make me poop in my pants, getting chemotherapy, having a hand that doesn't work, not being allowed to drive, unable to get up and down one stair, up all night in pain, and spending all damn day every day in the waiting room being ignored?" It stopped her in her tracks. It was totally out of character for me- I'm not confrontational. But I was tired of watching her sink into self-pity, drain me of energy, and then have her start up all over again at the drop of a hat. She said, "Oh. I guess other people do have problems."

I don't usually run around quoting the bible, but remember St. Paul? He suffered from something physical- we're not quite sure what- it was referred to as a "thorn in his side." But he learned to be content no matter what his circumstances.  How? By choosing his thoughts. Yes, you can choose your thoughts. Meaning, you can choose which ones you focus on.

Philippians 4:8

New International Version (NIV)
 8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

When I was told I would need new kidneys in 5 years, I cried for an hour. Then I got mad and said, "This is unacceptable. I will not accept this." And I started fighting again. At that point, I'd had lupus for 10 years, and I had tried dealing with it both ways: lying around hopeless, being a victim of the disease and my awful circumstances; and getting up and fighting. Getting up and fighting got much better results. So this time, instead of spending 6 months being sad and hopeless, I only needed an hour. I remembered what I was able to accomplish in reclaiming my health the first time, and I made an inner decision that I would again reclaim every single thing I had lost- and more, just for good measure. I'm no St. Paul, but I had figured out that every day if I focused on my progress instead of what I still couldn't do, I was motivated and hopeful.

In the movie "A Beautiful Mind," (based on a true story), professor John Nash descends into schizophrenia. There was a line in the dialogue near the end, that I found very interesting.  He was eventually able to reclaim a great deal of his sanity, and it had a lot to do with choosing his thoughts. I don't have the script, but to paraphrase, "Yes, I still hear the voices. I just don't pay them much attention."

I'm not asking people to pretend their problems don't exist. I'm simply asking to also acknowledge that there are good things at the same time, and to try to give more attention to those things. When I wrote about the importance of gratitude in my book ("How Can You NOT Laugh at a Time Like This?, I did not mention the above story about my friend with her "stuckness" because ... well, I didn't want to hurt feelings. (Hopefully, she doesn't read this blog.)

There is always something to be grateful for. And gratitude is one of the best ways to pull yourself out of a funk. When you feel the least grateful- that's when gratitude will help the most. For 21 days, commit to writing down 3 things that you are grateful for, when you get up, and right before you go to bed, It takes very little time, but you will notice a shift in your focus.

Yes, if you are looking for things to be upset about, you will find them. But the flipside is, if you are looking for things to be grateful for, you will find those too. It's all about retraining your mind to look for the latter. And the more you exercise gratitude, the easier it becomes. It becomes a healthy habit.
Choose life. Choose hope. Choose gratitude.

Well wishes-

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Carla Ulbrich, The Singing Patient and Health Coach - health coaching- visit this site to get a free e book on nutrition! funny medical songs