Wednesday, August 05, 2009

What Are You?

I’ve spent the past few weeks looking at blogs, web sites and forums, plus reading articles and other literature about Celiac Disease. This was not a mad search (like the first time when I was suspected of having the disease and the second time when it was confirmed). This search was about looking at Celiacs and the way they think and talk. I must admit, I’m learning a great deal. What I’m learning the most is, just like other groups (especially minorities), there is a division of how people approach and react to their condition, and for that matter, their existence. In other words, I will not allow Celiac Disease to define me as a person.

I am what I call a “Celiac Proper” and not a “Celiac Crazy.” Crazy might be a tad strong, but I’m trying to demonstrate the severity that takes place in a group of people affected by a condition and what happens when they come together.

Before I go any further, I must relay a story to you about a relative I know who has an autoimmune disorder. Like Celiac Disease, his autoimmune disorder comes with its own unique set of symptoms often requiring a bit more daily care and attention. The person I am referring to is what I call “Autoimmune Crazy.” His everyday language and actions are about his disorder and, more often than not, he has a way of being in your face about it, which is a big turnoff. It’s odd because he often shows up for work frail, but when it’s time to leave the energy surges through his veins. He is able to lead an active lifestyle outside of work and becomes very engaging and extraverted at public functions. Dancing is no problem, but picking up a pack of paper can wipe him out. It really is telling. I often think there are other issues going on… Selfishness, a need for attention, and maybe hypochondria, but I’ll leave that up to the psychiatrist I think he should definitely see… I’m curious, are you one of these people?

There is much talk going on with Celiacs. In chatrooms and open forums I hear conversations I find just a bit frightening. I’ve read comments like “If my husband can’t understand the need for me to have a gluten-free kitchen, we might have to divorce. This is a must for my survival...” or “I just moved into a new apartment and had to do an intense job with cleaning my home to make sure there is no gluten in the house…” or “I was at a restaurant and my waiter made a frown when I communicated my need for gluten-free food. I don’t think he was taking me seriously. I had to repeat several times that I couldn’t have gluten...” or “When I’m around products with gluten, like bread and pasta, I get nauseous and become ill…” or “David Letterman made a joke on his show about Celiacs and I can’t believe he did that. This is a serious disease!” There are many more comments, too many for me to write here in this blog post.

Don’t you find these comments just a bit strange, or am I the only one? I’ve been hit hard by this disease only because of a misdiagnosis. Now I am fully recovered. Yes, there might be some who say you are never fully recovered because you will always have Celiac Disease. I say don’t take me so literally. There is no reason why I can’t live life the way I always have, with grace, style, dignity and freedom.

I recently had an episode where I ate a product (unknowing and never suspecting it had gluten). My world didn’t fall apart. I didn’t have a mental melt down and surely didn’t need to react in a way that would have affected my friends. Actually, I experienced a few intense cramps, but overall my body did not react like it had in the past (that’s because I don’t have the level of gluten in my body I once did). I know I can’t live my life thinking, “Well, if that little bit of gluten didn’t harm me I can have more.” Celiacs know more than anyone that is not the case, and the world needs to understand our demise. Our condition is real and serious. However, I’m convinced there are many Celiacs who choose stress and overreact, which only exacerbates the situation. I know this because of the online communication I read and what I hear as a Celiac on the move.

I work in clinical research, and I’ve seen both coworkers and research volunteers who do not take personal responsibility for their health. Too many times people throw caution to the wind. It’s important to know what you’re up against and act accordingly, but do it without making a spectacle of yourself. I do want people to know I have Celiac Disease, and I want to be a positive role model. What I don’t want my condition to do is to define me as a person, as no illness should.

I know many people and have friends battling on-going disease. Some have cancer. Others have AIDS and different autoimmune diseases. Some have such horrific challenges, and my heart goes out to them. A friend of mine said to me just last night, “Hey, things could be worse for you.” I used to look at the world that way, but I don’t anymore. To do so has me comparing my disease and challenges to another individual, which I’m convinced is the wrong way to think. It draws on the negative, which creates an awkward debate of who has the more serious illness. I don’t want someone comparing my challenges with Celiac Disease to a woman with breast cancer or a man with prostate cancer. I want someone to look at me and respect my challenges, but that doesn’t require someone to say, “So, how are you dealing with your disease or are things working out O.K… You’re looking better.” PLEASE! If I tell you I have Celiac Disease, can we then move onto another topic? If you don’t think I look good, let’s not bring up the subject. We just need to
be mindful about how we speak, and some of us need not be so sensitive when people put their foot in their mouths. I don’t have friends who put their feet in their mouths, and if you do you might just have the wrong friends.

Anyone reading this post who thinks I am attacking Celiacs or feel all Celiacs act the same way are missing the point. All Celiacs are not crazy, but each of us can go overboard from time to time. We need to be more responsive with our mouths and actions. Know your audience, and know when you’ve said too much. Diarrhea of the mouth is a common problem with the world at large.

This Celiac is not going to create a gluten-free kitchen. I love to cook and bake. I will continue to make gravies, sauces, soups, bread, pasta, cakes and pies with gluten and serve them up to my friends who appreciate my cooking and baking. What I won’t do is test, sample or eat the rewards. Life doesn’t have to change. Oh, and if I can find some decent recipes that are gluten-free and taste great, I’ll serve those up to my friends too and they won’t know the difference.

I have a friend who has a nut allergy. Now, his allergy is different from mine (keep in mind, two different allergies – one does not supercede the other) because his symptoms are more visible and immediate. One of those symptoms is swelling and the other vomiting. However, that doesn’t stop me from serving nuts at parties and cooking and baking with them. While some people might be more severely allergic, I know and he knows just because he cannot have nuts doesn’t mean that others shouldn’t be allowed to enjoy them in his company. If for some reason the smell affects him (which sometime it does) he just removes himself from the area for a breath of fresh air. He doesn’t do what I’ve seen others do: throw their hands in the air, ranting and raving that they can’t be near nuts. I’ve seen people zap out when they could have just removed themselves and chilled out.

I don’t want to sound insensitive because, as my real friends know, I am anything but. However, to the woman who needs a gluten-free kitchen, you’ll probably get it, but at the price of your man. The world doesn’t revolve around you, nor should it. It’s time you think of real solutions. If your waiter mocks you or makes you feel uncomfortable, don’t make a circus out of your discontent. Simply ask to speak to a manager. Afterward, choose another restaurant. Your stress of ranting and raving will only make your body feel worse, causing more problems in the long run. I’m not sure what to say to the person who becomes ill just being around gluten. I’ve never heard of such a thing, but that doesn’t make it so. However, seeking out a psychologist might help you cope better.

As for Celiacs who get offended by Celiac jokes, I have the perfect response: “GET OVER YOURSELF and leave David Letterman alone. Yes, there are going to be people out there who are not going to understand our condition. However, that is changing by leaps and bounds. I’ve learned it’s pointless to attack an ignorant person. All you can do is educate and hope for the best. Creating a brouhaha is not going to make things any better.

This blog post was born out of a post I have yet to publish. It was a post on Celiac humor. I found some funny stuff out there in cyberspace and got a big kick out of it. I’m sure everyone might not have appreciated the laughter but I did, and a few of my Celiac friends did too. It will be published at a later date. You can’t take it all so seriously, and you need to laugh at yourself. I’ve been through hell. I couldn’t laugh then, but I can laugh now. I wish I would have learned to laugh a little bit through the process, but it’s hard when you are trying to make it through something you don’t understand and when you are feeling scared and alone. I still believe if I could have found some laughter in those dark moments, my recovery might have come even quicker. It’s something to think about.

Let’s all learn to respect one another. It’s fair to say we don’t always know the trials and tribulations of others. There are too many times when we misspeak, thus the reason to know your audience. I say choose your battles wisely, learn to laugh and, again, stop taking it all so seriously. Most importantly, don’t make others feel uncomfortable just because you are dealing with illness. Let’s work around it, together, with a commonsense approach. I’m convinced, now more than ever, we can all play, cook and bake together… even the Celiacs. No disease will ever define me. I can’t end this post with out asking, “Are you a Proper or Crazy Celiac?” - paerki

What would life be like without memories? It’s fair to say, there would be no life at all. Memory is our communication, reason, coherence, our action and more importantly, our feeling. Memories create our path in life, developing our psychology and leading us emotionally.

One of the best ways to create and store memories is with video. These simple effortless little snippets of time create diaries and become perpetual time capsules, which justify our walk on earth, telling all with great enthusiasm… I was here! I mattered! I lived! Please, don’t forget me.

Share your views, thoughts and opinions in the written word. Snap photographs so that your eyes can travel back in time, remembering the happy and sad moments that made you the person you were, are and became in life. But, whenever possible, capture video to enhance the memories you leave behind, so that others may pass the essence of your life on to future generations.


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There are many people in the world affected by disease. I never thought I would be one of the many. However, at any given time life can change. Mine did! There were many twists and turns, but I made it through and you can too. I am a Celiac on the move living life one meal at a time. Learn more about my life as a Celiac. Celiac Disease is a lifelong, digestive disorder affecting children and adults. In short, I have an allergy to gluten, and the treatment is a lifelong scrupulous avoidance of it.

No matter what, know this: You are never alone. There are people out there who’ve struggled, endured, made it through and are sharing their message of survival. No, they might not be at your side, but their spirit is out there in words, attempting to help others on their journey. Let’s all unite by sharing our individual stories, remedies for healthy living, food and recipes to keep us strong, and let’s find the laughter too because it can be some of the best medicine. Always remember, there is power in numbers. Check me out: A Celiac On The Move

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"I distrust those people who know so well what God wants them to do because I notice it always coincides with their own desires." - Susan B. Anthony

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