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This is my story

September is Chronic Pain Awareness Month and September 8-15, 2013 is Invisible Illness Awareness Week. Today I am asking all my friends to stand with me and wear leggings (or other non-pants) to show support in a slightly “invisible” way.

For millions of people an invisible illness is part of their daily lives. Nearly 1 in 2 Americans suffer from a chronic illness. 96% of those people have a condition that is invisible. From Celiac to Depression. From Chron’s to Complex Regional Pain Syndrome. I have friends who suffer from Lyme disease and Hashimoto’s. Friends who have crippling adrenal fatigue and life threatening food allergies. And yet, when you see photos of us all together, you would not be able to guess that any of us were sick, in pain or in an epic battle for our bodies. That is how we all want it. We want to be just like everyone else.

I have written a few times about what it means to live with Complex Regional Pain Syndromefighting for hopewhy I write about it, and the things that the disease and the treatments have taken from me.

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And although FrannyCakes is a place for revenge cookies (which are totally a thing) and cupcake therapy. It is also a place that I hope I can show you that being sick and being young isn’t the end of a full life. Just like being gluten-free isn’t a sentence to a life of bad dessert, pizza and pasta.

Every bit I share of my story, I share so maybe someone thinks before they sit in the handicapped seat on the train or park in the handicap spot. I share so that maybe someone won’t give me a sideways look when I go through the security line at the airport in a wheel chair because I can’t stand in the line. I share so the next time a server gets a request for extra care with a meal they know just how serious it is. I share because I have eaten one too many beany brownies. I share because even the most well-meaning friend doesn’t understand the toll this condition takes on my body. I share because I don’t understand it either.

frannycakes with erica from celiac and the beast

Because this is my story. The friends and the family. The triumphs, the trials and the food.

chicago concert

A girl living life. A girl who just happens to have a body with robotic parts and an aversion to wheat and shellfish. A girl on an adventure.

Please help me spread the word that an invisible illness is both very real and very much just a detail in a list of the things that make me me.

And thank you so very much for coming on this ride with me.

 

HAWMC Day 10: {nearly} Wordless Wednesday – I feel pretty

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is to post a picture we like of ourselves.

I learned a little something about myself when looking for a picture to post.

I tend to make faces when a camera is in my face. All sorts of silly i-don’t-feel-so-pretty faces. The kind of faces where you try to make it seem like you have a devil may care attitude. When all you really want is for the camera to go away.

And that is in the pictures that I let get that far. Normally I prefer to be on the other side, snapping away. Finding and framing a world that sometimes I feel like I am not part of.

But every now and then, a picture where I am not making a ridiculous face slips through.

Enter this photo. It is me and my newest cousin (my cousin-in-law if you will). Dressed to the nines.

Having fun despite the pain. Living life and not letting it pass me by.

HAWMC – Day 2: Introductions

Inspired by my co-sufferer, Candice at Embrace GFree, I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is introducing you to my condition(s).

When I started thinking about this prompt, I was debating if I should address it from a food allergy/sensitivity perspective or from the perspective of someone who has CRPS. The more I thought about it, the more I realized just how similar having an invisible illness is, no matter if it is a common autoimmune disorder such as celiac or something as rare as Complex Regional Pain Syndrome.

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So, here are 5 things I want you to know about living with an invisible illness:

1. I am not my illness.

Yes, my food sensitivites and allergies dictate what I can and cannot eat. Yes, my chronic pain dictates how much activity I can handle. But I am still me. I still like shaking my booty on the dance floor when I can tolerate it. I love exploring new restaurants and trying new cuisines. Have a summer festival you want to check out? Well, this lady would love to go. I am a 28 year old who does normal 28 year old things.

I go on dates. (Well, sometimes). I like grabbing a drink with friends. You might even convince me that a baseball game would be fun.

I speak French and German. I write a gluten-free blog. I enjoy sci-fi.

Oh, and I have a rare disease. But I am all those other things first, and so are you.

2. The internet is full of badness.

From misinformation to inflammatory posts, the internet can be a scary place. Throw in people who can be so passionate about their views and opinions that it borders on bullying (or heck, some of them are actual bullies), and you have a recipe for disaster.

Find people you identify with, but who don’t bring you down. Follow sites and blogs where positivity is the focus.

And double check any claims or treatments you find with your doctor. You might have found something legit they hadn’t heard of, and you might have come across some hooey.

3. My illness is not your illness.

My gluten-free & celiac friends have taught me this. They are often saying “My celiac is not your celiac,” and it is a sentiment that is relevant to any chronic condition. Just because someone has the same diagnosis as you doesn’t mean that their experience is the same as yours. In fact, while it might be enlightening to learn about how someone else with your condition is living, it is just as important to remember that your body is unique and that no matter how similar we are, our bodies are not the same.

4. We’re all learning.

I am always learning new things. About my illness. About possible treatments. About myself. There is new research all the time. Science is evolving. People have had my diagnosis for years longer than I have. I have had it longer than others.

So be open to learning. Be willing to teach (not preach!).

5. Cupcakes are therapy.

And at some point in this existence, my job title is going to be “Cupcake Therapist”.

Enjoy a cupcake when it is warranted. Eat broccoli when you should. Never eat broccoli when a cupcake is called for.

If you want to know more about living with CRPS: