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!