Lupus- not just a punchline on House, MD

Lupus- it's not just a punchline on House, MD.

This infographic brought to you by the Lupus Foundation of America. Visit them at lupus.org.
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

Happy Things Jar

It's only January 5, so we're not too far into the year, and really it's never too late to start something good. So I thought I'd share a nice idea that's been going around the internet this past week: a "good things" (or "happy things") jar.

Take any clean empty jar with a lid- mason jar, spaghetti sauce jar.
Each day, write on a slip of a paper and put in the jar any of these kinds of things:
- something that made you smile today
- something that made you laugh out loud today
- an accomplishment
- a compliment someone gave you
- anything else good you want to put in there (ideas? comment below!)

It's kind of the reverse of resolutions. It's appreciation.
The remarkable thing about appreication and gratitude, is that the more gratitude you show, the more you have to be grateful for.  The Law of Attraction would say it's partly your growing awareness, and it's also the kind of energy you attract when you are grateful. You begin to attract more good things as you are in a the kind of similar state of being. Like attracts like.

Regardless of whether you believe in the law of attraction, or whether you think it's a bunch of hooey, what a treat it will be to open the jar on December 31 and relive each joy in your "good things" jar.

I just started my jar, and I plan to put in both big and small things, like finding out yesterday that my book has been translated and published in Thailand... and getting a warm fuzzy e mail from my cousin. I haven't decorated my jar yet, and I may not even get around to doing so. But I do plan to put at least one new and good thing in it every day.

Who else is up for starting a good things jar?

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.twitter.com/singingpatient

www.linkedin.com/in/carlaulbrich

"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

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

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

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?
Best,
(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:
http://drhyman.com/blog/conditions/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

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