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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.


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:



HAWMC Day 1 – Getting Started

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 asking why I started writing about health.

Do I even write about health? Maybe? Sort of?

Last summer, I changed my tagline from “Confessions of a gluten-free foodie” to “Finding hope & happiness in the gluten-free kitchen”.

You see, at first this site was all about the things I was concocting in my little kitchen. It was about my unabashed love affair with butter and sugar. It was about the lasagna that I made from the abandoned tomato plant in my garden. It was about celebrating food. In a way it was allied with a health-related cause (gluten-free), but the lack of gluten was just a footnote.

Raisin Cinnamon Swirl Muffins

Those things make for a pretty ordinary food blog. Even if you make the best gluten-free cupcakes this side of the Mississippi (no, Kyra, I am not willing to find out for certain that yours would win if we ever went head to head), everyone else is talking about their cupcakes and the heart warming tale of making them at their grandmother’s side. And their chickens with the fresh eggs that they collect every morning. And their epic buttercream piping skills.

What did I have? I had a knack for making gluten-free desserts (ok, and doughnuts) that people who ate gluten actually liked, an absurd love for the Spice Girls and a celebrity crush on AC Slater.

All that, a bag of chips and a deep, dark secret.

I kind of talked about my migraines becoming manageable and that I lost 100lbs when I went gluten free. I mentioned a shellfish allergy at some point. But this blog wasn’t about the health stuff. It was about sugar and butter. Merengue and buttercream. Mousse and pậte à choux. And making cupcakes dance.

pumpkin spice cupcakes from maryfran wiley on Vimeo.

There are people who blog about health who I admire. Whose advice I take. But certainly, I am not one of them, I eat cookies!

So see? This wasn’t a place where I advocated for health. I advocated for chocolate.

But one day, that changed.

I was bullied on Twitter for a statement about prescription drugs. Because clearly you, random twitter user, knew more than my doctors. It wasn’t ok to sit back and watch adults bully each other. I felt that I needed to take a stand.

So, I shared that secret.

I put it out there. I am sick disabled a hot mess a chronic pain sufferer. My pain is caused by Complex Regional Pain Syndrome, a rare and debilitating disease with no cure. A disease that my coworkers and many friends had no idea I suffered from.

And that was that.

In the hour it took to write the post, I knew everything was changing. And I knew that nothing was changing. I was going to keep eating chocolate and making buttercream. But I wasn’t going to waste this opportunity to offer hope to everyone else who has an incurable disease.


I changed my tagline and started to focus my writing. I wrote a call to live a remarkable life and paired it with whiz-bang cupcakes. I wrote about being sick and having hope. I resolved to get control of my body back.

Somewhere along the line, I found hope and happiness in my gluten-free kitchen and I couldn’t wait to share.




Sick, not sick (and some soul soothing soup)

Life is about more than cookies and doughnuts. It is about hope. Positivity. Friends.

Life is full of things. Big things. Little things. Job things. And even cat things. Life can always use more cat things.


This is a story about one of those things.

The big thing. In my reality, it is the one thing. The sick thing.

Sometimes, the fact that I am sick comes out to play. But, more often than not, it seems to catch people by surprise.


I am not the kind of sick that has treatments that cause the loss of hair. I am not the kind of sick where my disease will shorten my life expectancy. I am not the kind of sick that will get you sick (as long as you don’t count this nasty cold that I have just about kicked).

And maybe sick is not the right word. Disabled isn’t any more accurate.

But I promised I was going to fight harder this year. So I am doing ketamine infusions.


And while I spend today in a hospital room, IVs beeping, a resident hovering and the groan of the blood pressure cuff as it auto-inflates every five minutes, I want you to see.

I want to come out of hiding. Sure, I’ve told you I am sick before, that one time I had to defend myself and my decision to use Western medicine as my main form of treatment.

I have never read so many kind words.

So, I thought I ought to follow it up. Since Rare Disease Day is next week. And since I am a rare bird. And my since disease wears an invisibility cloak.

People who I don’t get to see often will comment about how good I look. About how I must be doing better.

But here’s the rub. I’m not. And I may never be. This baby is rare. And it hurts like hell.

My left leg is a different color due to circulation changes from the CRPS/RSD
My left leg is a different color due to circulation changes from the CRPS/RSD

Thinking hurts. Being hurts.

Raging, burning, searing pain. Pain that is worse than getting a finger chopped off.

And there is nothing they can do. Well, other than feed me some hallucinogenic drugs after they turned me into a robot. I need you to understand the level of pain I feel on a good day.

Here, dear friends, is where this story begins.

I have lived without real hope of living pain free for a while now. We are working on getting the rapid and vicious swings under control. Implementing coping strategies. Finding a way to live a life that is as close to what other single ladies my age are doing is incredibly important. Things like last weekend’s outings with my gluten-free friends prove life goes on.

But this isn’t about that. It is about an argument I recently had with a friend. An argument about how I shouldn’t bother to hope anymore. Particularly since all we can do is manage some symptoms. I am living without a cure.

You read that right. He said hope was a waste of energy. And on some level, I can agree. Sitting at home, wallowing and wishing is a waste of energy.

I thought maybe we just have a fundamental difference of opinion about the definition of hope. But our argument made me think a rereading of Webster’s definition wouldn’t solve our inability to see eye to eye on this.

No. He really, truly thinks that hoping, believing that there is something better is worthless.

I just can’t go there. Five years ago they told me I might never walk again. I ran a 5k. I sure showed them.

Two and a half years ago, I was given a diagnosis for the knee injury that wouldn’t stop hurting long after the tendons had healed and strength had been recovered. Every treatment option has given me something to look forward to. There was Brutus the interthecal drug pump that I carried around in a giant purse. There was the lidocaine patches. And the sympathetic nerve blocks. And trips to shrinks.

I have made it this far because I have hope. (And an amazing support system of friends and family who give me something to hope for).

Not delusions. Just hope. Because if I don’t hope that this treatment will help, why bother even trying? And if I don’t bother, what is to keep me from utter despair?

In all things it is better to hope...positive17

Yes, I am sick. And yes, it really effing stinks. But I refuse to be a shell of a person. 

I refuse to be defined by the ski trips I can’t enjoy. Or the special rides through the air port on one of those little carts.

I am going to keep finding ways to live my life like your average getting close to thirty single lady.

I am going to surround myself with friends and family.


I refuse to let my disease define me.

This is how I hope. By fighting. And by believing I have something to fight for.

The whole point here, is that there is no reason to give up hope. No matter how black the day. No matter how much you want to just fade away. No matter how much you would do anything to stop the pain. To make it all just go away.

I know how it feels. When the tears come at night because no one understands. When journal articles and research studies show no promise of a cure. When cutting off your leg seems like a sensible solution (FYI it isn’t. Apparently the pain would stay).

You, dear friend are not alone. Whether your affliction shows up on a list of rare diseases or it touches 1 in 3 women (heart disease!), there is hope. And if there is hope, you can be assured you are not walking forward alone.

Sure, it is going to be tough. It is what you are going to do to survive. And you are going to hope (and work towards) more than merely surviving.

That is what the hope is for. Reminding yourself of the possibility of better.


Sometimes, when I start to falter, I turn to cupcakes. And while they are an excellent form of therapy, sometimes it takes a real soul soother. Soup. But not just any soup. Hearty, flavorful soup. The kind of soup that reminds you of the joys of eating.

Spinach & Lentil Soup

Recipe Type: Soup
Author: Jamie Oliver
Prep time: 15 mins
Cook time: 45 mins
Total time: 1 hour
Serves: 6
An excellent soup adapted from Jamie Oliver’s Food Revolution.
  • 2 carrots, peeled and roughly sliced
  • 2 stalks celery, sliced
  • 2 medium onions, roughly chopped
  • 2 cloves of garlic, minced
  • 2 tbsp butter
  • 6 cups chicken stock
  • 10 ounces red lentils
  • a thumb-sized piece of fresh root ginger, peeled and sliced
  • 1 tablespoon tomato paste
  • 7 ounces spinach, cleaned and torn
  • sea salt and black pepper to taste
  1. Melt the butter in a large pot, add the onions, carrots, celery, tomato paste and garlic until the carrots have softened and the onion is translucent.
  2. Add the stock to the pot, then add the lentils and ginger.
  3. Stir the soup and bring to a boil. Once boiling, reduce heat to a simmer. Put lid on for 10 minutes or until the lentils are cooked.
  4. Add spinach and cook for 30 seconds.
  5. Season well with salt and pepper.

On Thursday, February 28th, let’s take a stand for rare diseases. The awareness color for CRPS is orange, and I will be wearing it to show support. Will you join me?