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

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Eating Out on a Strict Diet

Someone asked me today how I deal with eating out, with my strict diet. (I'm gluten-free, vegetarian, and also trying to avoid dairy.)

I don't have gluten or dairy (or meat) at home- I've found plenty of acceptable - even tasty- ways to substitute for both gluten and dairy at home. Almond milk in my smoothies, veganrella cheese on the occasion I want a little cheese, coconut milk ice cream on the occasions I just want a dab of ice cream... And gluten-free bagels, pizza crusts, and sandwich bread. Of course all fruits, nuts, seeds, and vegetables are dairy- and gluten-free (unless you coat them with cheese and bread crumbs- but you can even get GF bread crumbs and dairy-free cheese if you're so inclined).

It's not as hard as it once was to eat tasty food at home that is gluten-free and dairy-free. However, it's not as easy to eat gluten-free and dairy-free at a typical restaurant. I find myself going through the menu using the process of elimination: meat, wheat, wheat, meat, dairy dairy meat meat wheat ... Then getting a salad, or something off the "side orders" section, where all the vegetables are. I never eat gluten, but I have strayed on the dairy when eating out. And I pay for it. It's frustrating having such limited choices at restaurants.

However, I'm not willing to give up eating out altogether. I've found a few restaurants I really like and I frequent them because they have tasty gluten-free dairy-free options. Here's a bit about where I like to eat:

Frequently, I go to Moe's, a Mexican build-your-own-meal kinda place. This is a national chain.
http://www.moes.com/

You go down the assembly line and build your burrito, or taco, or quesadilla, or, in my case, since I am gluten-free as well as trying to be dairy-free, I get the rice bowl. The ingredients at Moe's are quality: organic tofu, grass-fed beef, fresh-made guacamole. So I get a tofu bowl with beans, guacamole and grilled onions, no cheese or sour cream, and it's quite tasty. I even indulge and have a few corn chips (corn is gluten-free). The salsa bar *rocks*! My favorite salsa is El Guapo. Yum!

When I was in South Carolina over Christmas, I at at Moe's 3 days in a row. I was tickled pink when they opened a Moe's just a mile and a half from our house in Somerset, New Jersey in January (it's in the Cedar Grove shopping center). It was like an answered prayer. Finally, somewhere nearby that has tasty non-gluten choices,  and is relatively cheap, fast and healthy. Plus they've always got good music playing.

I should point out that Moe's, like most restaurants, is not *perfectly* gluten free; the same utensils are used to scoop the beans and rice onto a burrito or quesadilla. So if you are Celiac or severely gluten intolerant, be mindful of that. The only chain restaurant I've visited that is extremely careful about cross-contamination is Uno's Pizzeria. Separate toppings, utensils, are cooking area for gluten-free, and the manager brings out the GF entrees him/herself.

Another chain that has a tasty gluten-free menu is PF Chang's (Chinese).

The other types of restaurants I really enjoy are Indian (plenty of gluten-free dishes, but many have cheese and cream) and Japanese (hardly ever has wheat or dairy unless you get hibachi- that has butter. Also you gotta BYO soy sauce, because most soy sauce has wheat in it. I use Bragg's Amino Acids).

So why am I gluten-free and (trying to also be) dairy-free? Any of you who have read my book already know the answer: the one time my lupus tests went negative (meaning, no sign of lupus) was when I stayed on a gluten-free, dairy-free (and no artificial sweeteners) diet. I was also doing chi gung daily and exercising regularly, but when I went back to eating dairy and maintained all the other things, my tests went positive again. So... you would think that would be enough incentive to stop eating it entirely, forever.

But I'm human, and I get lazy, or tired, or tempted. I don't eat dairy all day long, or even every day, or even very much, but it doesn't seem to take much to wreak havoc with me. I decided to have a treat on Valentine's Day, and I had a big dish of premium chocolate chip ice cream at a restaurant. (Yes, it was tasty.) And I felt fine... until the next day (this is the old delayed food allergy thing). Then for 2 days, I could not completely open my left hand.

To anyone who thinks I'm being high maintenance or picky by having such a diet, I say this: if I were being picky, I would not eliminate tasty foods. As far as being high maintenance? Yes, I am. But I do my own maintenance. I bring my own food to parties. I don't ask for special favors at restaurants.

Yes, I'd love to eat whatever, whenever. Wouldn't we all? But what would I like more than being able to eat whatever, whenever? Feeling great, looking great, and having enough energy to do whatever, whenever.

Maybe that means eating out less. Maybe it means learning to cook. Maybe it means learning to like different foods. Maybe it means funny looks or weird remarks from people who don't understand. I am delighted to endure any and all of that if it means I can use my hands without trouble and avoid more prednisone, more kidney failure, another stroke, and more hospitals.

Diet is powerful. I've found some things that help me stay healthy. It's well worth the trade-off.

A couple more resources for those who are or who are thinking of trying being gluten and/or dairy free:
Restaurant lookup:
http://allergyeats.com/

Gluten-free magazine:
http://www.livingwithout.com/

Thinking of going gluten-free or dairy free?
Try it for a few weeks.
Track your symptoms, especially fatigue, irritability, brain fog, digestive and bathroom issues.
Then decide for yourself.

Not everyone has gluten or dairy intolerance, but for those of us who do, we can finally be in control of our well-being with one or 2 diet changes.

Here's to your health-
Carla

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

Carla Ulbrich, The Singing Patient and Health Coach

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

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Test results back: No More Lupus!

I just got back from the rheumatologist and my tests for lupus all came back NEGATIVE! Negative ANA and Negative for double-stranded DNA. I'm not sure they've ever been negative in the 16 years since diagnosis.

If my doctor was a jerk, he might have said I’d been misdiagnosed and never had lupus in the first place. It’s hard to say that in the face of my having had pretty much every lupus symptom a person can have- and yet there are many doctors who do this.

The idea that someone can test negative after years of testing positive- or that someone can get completely better from a disease that in their minds has no cure- it just rocks their world. So, many doctors just decide to negate your entire experience – both the pain and suffering and the hard work you did to get better- by saying you never had lupus in the first place.

Thankfully my doctor is not one of those folks and his pen was actually moving while I babbled about Chi Gung and the gluten-free dairy-free diet. And this is how we start a health revolution: taking care of ourselves, and letting doctors know when we find a non-drug therapy that works. Doctors get information from drug reps and patients. We may not feel like it sometimes, but we are just as important as those drug reps.

If enough people start mentioning Chi Gung or gluten free diets, or any other effective alternative treatments, doctors will start taking it seriously and suggesting it to their patients. And patients will start taking back control of their health. That alone is a revolutionary act, which will lead to a better sense of well-being and hope. Those patients will fare better, thus raising the doctors’ eyebrows again about these methods of self-care that we can use to supplement whatever they prescribe, and he/she will open their minds even more to the idea of using complementary medicine.

I just called a friend of mine to tell her my tests came back negative. She and I were hanging out just a couple weeks ago and I was telling her “My tests are going to come back negative for lupus and some doctor is going to claim that I was misdiagnosed, even though I’ve been diagnosed by probably 20 different doctors by now, tested positive consistently for 16 years, and been through every lupus symptom in the book. And it’s going to make me mad, but in the end, the important thing is I’m recovered from the illness and I know the truth in my heart.” I also have the truth in my reams of lab results.

The biggest leaps in my recovery this time have come since quitting drinking diet soda, starting Chi Gung, and going on the gluten-free/ diary-free diet. The final piece of the puzzle was my declaring and steadfastly believing that I would get the lab results to say “NEGATIVE” for lupus, and they did exactly that today.

How to celebrate? I joked to my husband that we should go out for gluten and diet coke. I thought his face was going to shatter to pieces with all the contortions it was going into. Nope, I’m not going back to my old ways- I’m moving forward, and I can’t think of a better way to celebrate being strong and healthy than to go to Philly and run the Rocky steps! Today, the great lab test results- tomorrow, the world!