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Sjogren's Syndrome

Sjogren's Syndrome: Despite the Pain, Hope

Gary Marshall never knows when a Sjogren's flare up will hit and leave him in debilitating pain. This is his story…

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When a Person Is Diagnosed With a Condition, Whole Family is Affected

When my husband was diagnosed with an inner ear condition called secondary endolymphatic hydrops (hydrops) and told he needed to be on a low sodium diet last year, you would have thought that, given the way I reacted, I was the one with the disease.


It was like I was grieving some great loss. Whether it was the loss of dining out with my husband (temporarily) or the freedom to rely on tastily prepared foods from my favorite market, I wasn’t quite sure. But one thing was for certain. I was NOT a happy camper. First, I was angry. Then, I was sad. Then, I was bargaining with God. As in please, ‘God if you cure my husband of this chronic condition I will be a better person.’ Eventually, I accepted his condition, but it sure did seem to take awhile.


I’m not sure why I reacted so strongly to my husband’s diagnosis. Maybe it was because my mom and father-in-law had recently died, and our lives seemed full of loss. And after my mom died, I had been looking forward to life returning to “normal.” Whatever normal is. Then, when my husband was diagnosed with hydrops, it seemed like one more loss …


While I’ve never been one to cook with salt, relying instead on fresh herbs to spice up the dishes I make, if you’ve ever been told to restrict your sodium, you’ll understand that sodium is hidden in just about everything. So venturing out to eat at restaurants and in the homes of family and friends can be quite a challenge. The other thing is that I, like many other people, rely on “convenience” foods such as canned beans and soups and prepared foods like hummus. Not to mention that sauces and condiments are loaded with sodium like soy sauce, pasta sauce and fish sauce. So suddenly everything seemingly needed to be made from scratch.


For a while, we didn’t risk eating out, while my husband was getting his condition under control. Hydrops, which we were told could stick around for a few months or 20 years, caused a painful fullness in his ears and a disturbing ringing in his ears. And this condition can lead to hearing loss if you don’t watch what you eat. So, my husband didn’t feel like experimenting much when it came to food. He wanted to play it safe, which I can understand.


After awhile, though, I, for one, was beginning to feel claustrophobic, culinarily speaking. If I weren’t such a foodie, I suppose I wouldn’t have cared. But the truth is I love food. Maybe too much. So once I moved beyond my temper tantrum, I was determined to find a way to continue enjoying food and cooking tasty meals for the two of us. Which I’m pleased to say, I’ve done!


But I also wanted to eat out. So we started asking around to see which restaurants could accommodate diners on a low sodium diet. And what we learned was that a lot of places can’t or won’t, which is rather unfortunate since so many people these days have medical conditions, such as heart disease or diabetes, that require them to restrict their sodium. And while I’ve noticed that a number of restaurants now feature gluten-free options for those with celiac disease, I can’t say I’ve ever seen any sodium-free entrees on the menu.


But the good news is that we found some wonderful restaurants that happily prepare food sans salt, especially those that make their dishes “to order.” Other places, on the other hand, bake and pre-salt their potatoes, ahead of time. Or they may marinate all their meat in marinades that contain salt. In which case, nope we can’t eat there.


Over time, we found four ethnic places in town where we could eat low sodium meals that are healthy, balanced and most importantly, yummy. There are two Thai places (http://bestlemongrass.com/) (http://highthai.com/index.html), one Indian restaurant (http://cafetandoorcleveland.com/) and a Chinese place (http://sunluckgarden.com/main.html), as well as Outback Steak House (http://outback.com/), which surprised me since it’s a chain restaurant, and I don’t think of chain restaurants as being willing to cater to special needs.


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Ellen Brown is a certified professional coach, based in Cleveland, OH, and a regular columnist on ShareWIK.com. Visit her website at http://ellen-brown.com.


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