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


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

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: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

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 http://lupusandhumor.blogspot.com/

All my best-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

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

http://tinyurl.com/348hroc- 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 allexperts.com.

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 fevers...my cholestrol levels are very high...they want me on low-fat no salt diet...I have been diagnosed with pleurisy...high blood pressure...my 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: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?a

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


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

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 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:

Here's the wikipedia page:

As always, in the spirit of wellness-