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The Not-So Grand Slam

Posted by Shelley on Aug 31, 2011 in Autoimmune Conditions, Gluten Free

I had to share this because I never thought I would have something in common with a world class tennis player.

Venus Williams and I both have Sjogren’s Syndrome; she was recently diagnosed and my heart goes out to her. I used to teach group exercise classes 5 or 6 times a week – okay, so it wasn’t professional tennis with enormou$ endor$ements. But I had 24 hours in a day and I did something for 23 of those until the summer of 2007. I went undiagnosed for a year and have to agree, the condition truly does suck the energy out of you, as Venus describes in this article.

Until you find a doctor who will work with you and help your quality of life it is a tough row to hoe. The good news is it is a manageable condition, although there is no cure. I take more medication than I would like and have drastically changed my diet and lifestyle in order to reduce inflammation. None-the-less, it helped me to see that even an incredibly physically fit person like Venus could become a fellow member of the Sjogren’s Club. I know she didn’t sign up for it and I certainly didn’t either. But we’re both in good company.

 
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My 5 Favorite Gluten Free Items in my Fridge Right Now

Posted by Shelley on Jun 7, 2009 in Autoimmune Conditions, Gluten Free

Since I know you’ve been wondering what in the world I eat on a regular basis (besides Snickers and 3 Musketeers bars) I thought I would give you a little look into my fridge. Please ignore the fact that it needs to be cleaned in a big way.

1) Organic Tamari Wheat Free Soy Sauce
2) Organicville Tarragon Dijon Vinaigrette
3) Seal Sama Teriyaki Sauce
4) Annie’s Naturals Organic BBQ sauce, Hot Chipotle
5) Organicville Organic Ketchup

I am noticing as I type this list that all of these are sauces of some sort. And that makes complete sense! Because you can take chicken or pork and make it oriental or bar-b-quey. Or, you can dip veggies in the Tarragon Dijon or even use it as a marinade, besides, it tastes great on any and all salads. Best of all, an order of McD’s fries is gluten free and is better than ever when dipped in my Organicville Ketchup!

Another common theme is there is NO WHEAT DISTILLED VINEGAR in any of the aforementioned products. Organic cider vinegar or rice vinegar = okay. Wheat = fever, rash, achy joints, in the bed, sick. I don’t know why. Except my research indicates that folks with my particular autoimmune condition cannot digest the wheat protein, gluten. All of a sudden my body thinks it’s a foreign substance and it begins attacking itself. Crazy! But I don’t think I would know how to live my life if it weren’t a little crazy now and then.

In all honesty, I love vinegar and I hate the fact that I can’t ingest it. I’m a greek salad girl, a full moon bar-b-que sauce woman, a heinz ketchup fanatic. But I’ve found some substitutions and they are quite good and they are good for me. I just ate my organic tamari soy sauce on a stir fry I whipped up tonight. And I’m feeling fine! And by the way, PF Changs has that gluten free menu with this same sauce :) . It’s all good!

On my next post, I’ll give you a sampling of what we eat around here. I promise it’s not boring! And if you’re really curious about eating “G-free” (I sound so hip when I say it that way – ha!) then comment on this post and we’ll have you over for dinner. For real. Consider yourself invited!

 
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What Elisabeth Hasselbeck and Shelley Shaw Have In Common

This is a stretch. But here we go…

We’re moms. We both have great husbands. She does have a spot on a major TV talk show, which, if given the opportunity, I’d do the same in a New York minute. And we’re both blonde. She likes Sarah Palin. So do I. And I like Australia. Maybe she does too? Surely she does, after being on the Outback Survivor show and all.

But here’s the biggest connection I have to this celebrity. She’s gluten free! How ’bout that?

I get asked daily about this and I have found it is simple to explain. However, once it sinks in, most folks look at me like I’m crazy and say, “wait a minute, what DO you eat?” It’s tricky, but there is a way.

My story is much different than hers, as most of us with a gluten intolerance would tell you. It is generally on a case by case basis and sometimes (well, ALOT of times) goes undiagnosed. Because wheat is a huge part of the Western diet, it is impossible for most people to imagine living with out it. But truth be told, I’m living because I do live with out it.

Chronic pain and inflammation is a foreign concept to many and was to me before I began noticing how bad I felt a couple of years ago. I wondered, why I am bloated 3 weeks of the month? Why do I feel sick and have brain fog after eating a bowl of oatmeal? Those were uncomfortable symptoms but I lived with them. Until I started a fever, joint pain and a rash that would NEVER go away. Yikes! I had every test under the sun. And what came back was an elevated rheumatoid factor. Then my proactive, take charge self decided it was time to figure this out.

I was not diagnosed with rheumatoid arthritis. But it was becoming apparent I had an autoimmune disorder and these things take time, sometimes years, to figure out. Ever heard of prostrate prayer? Well, you can bet I was on my face daily. And when I wasn’t on my face I was in the bed. And when I wasn’t in the bed I was in pain. Again, Elisabeth had her aches and pains and I did too. I would say agony might be another thing we have in common. Plus food!!! Food, had become the enemy. Both Elisabeth and I have been at war with our own bodies.

Long story short, people suffering from a wide range of diseases—from autism to osteoporosis, from diabetes to rheumatoid arthritis—can often benefit from a gluten free diet. A chiropractor finally told me I needed to give this wheat free/gluten free thing a try. I was ready for anything. When you live this way for any length of time you will do ANYTHING to get better.

So, I have been gluten free for a year now and I am coming out on the other side of this crazy season of my life. I still have a chronic autoimmune condition which requires daily medication but by controlling the amount of wheat and gluten in my diet I have become much better. I do not have the same condition Elisabeth has, but my autoimmune disorder goes hand in hand with gluten intolerance.

Gluten is the binding element in wheat. It is a protein and once it gets into my bloodstream my autoimmune system attacks it as a foreign substance. I can handle LOTS of other foods (thank you God!) but not wheat. And it’s a full time job figuring out what you can eat. Thank goodness for celebrities like Elisabeth, for shedding some “celebrity” light on this discovery. Who knows, I might have another thing in common with her. We might just be trendsetters.

And I’m good with it.

 
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The Sjogren’s Club

Posted by Shelley on Mar 12, 2009 in Autoimmune Conditions, Uncensored Shelley

Of all the opportunities I’ve had in my life this is the one club I did not want to join! But I am in… really in. Like, I’ve pledged and been initiated for a long time now.

Here’s what I can tell you: Sjogren’s Syndrome (SjS)is a progressive autoimmune disease. It would be considered a connective tissue disease, sort of a cousin to Lupus or Rheumatiod Arthritis. SjS is a chronic disorder that causes insufficient moisture production in certain glands of the body. Basically, my normally protective immune system has decided to attack my moisture-producing glands, mostly my salivary and tear producing glands. It doesn’t necessarily sound like much and to many folks diagnosed with this condition it ends there. But according to the Cleveland Clinic website there are many more symptoms associated with the disease and guess what! They are all part of my membership in this club!

To get in the club, one must have dry eyes. This is the hallmark characteristic of SjS. My extremely dry eyes were confirmed by the opthamologist at UAB here recently when the Schirmer’s Test showed no tear production. I could’ve told them that. I thought that when I stopped crying it was a sign of maturity. The real deal is I have virtually no tears and I get a headache and feel like throwing up when I need to cry. Now I use Restasis, which initiates a little bit of moisture. I still don’t have many tears but I can look at a computer screen for a little bit longer.

To secure your spot in the Sjogren’s Club one must possess an extremely dry mouth and throat. This causes difficulty in chewing and swallowing, plus a decreased sense of taste and dry cough. It does nothing for my appetite! Again, up until recently, I thought it was normal. But I always wondered why I was constantly thirsty, even after drinking half my weight in water! Increasing my water intake helps but honestly, I have been thirsty for so long it really doesn’t bother me as much as the rest of the perks associated with my membership, which would be the following: extreme fatigue and joint pain. There is so much to address in these two things alone that I will save it for another post.

Now that I’ve researched it a bit more, my other symptoms fall into the “not so common” features of SjS. Irritation of the nerves in the arms, hands, legs or feet (neuropathy), feelings of numbness and tingling, easy bruising, fever and this lovely rash, which is my secondary automimmune condition (yes, I have two) known as vasculitis (inflammation of my blood vessels). Now, I’m not only a member of the club, I am like one of the top officers.

SjS is chronic and never really “goes away”, my doctors and I just try to manage it so that I am more comfortable. Vasculitis can go into remission. When it’s not in remission it’s called a flare. I am still looking for the manual on instructions for this part of the membership. Vasculitis associated with SjS is not common. It’s almost like I am in two clubs. Two for one!

I’ve kept this lighthearted and sort of sarcastic because when I decide to explain more about autoimmune disorders in further posts it may not be as funny. This whole thing has really cramped my style and no, I’m not dying, but sometimes I feel like it. You probably agree with me, that everybody’s got some membership to some club, whether it’s the your big toe hurts club or the chemotherapy club, or whatever in between. Life in this broken garden has some (joint) pain, (mental or physical) exhaustion and (non-existent) tears. It makes me even more grateful for the new body I’m going to get one day! That will be in the Heaven Club :) .

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