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 post was to write the most ridiculous thing you’ve heard about health or your condition.
I hear stuff all the time. Crazy, ridiculous things. Usually in the comments sections of articles. The ignorance is heart breaking, and often the grammar is just as appalling.
About Chronic Pain (I am going to go with the whole category because the ridiculous things said apply to all varieties of pain)
“It is a great way to get some sort of pity and plenty of state benefit.People look on the internet to find an illness that fits there way of life.”
“It is all in your head.”
“You just want pain killers.”
“Oh, I broke my ankle once, I know how you feel.”
“You smile so often, you can’t possibly be in pain.”
“If you just lived gluten-grain-dairy-caffeine-alchohol-free life you could cure your pain.”
About living gluten-free
“You just want people to feel bad for you.”
“Gluten-free, isn’t that like low carb?”
“I thought gluten-free people were skinny.”
“People with food allergies & sensitivities should not be allowed to reproduce so we can get these problems out of the gene pool.”
How I respond
Comments like these are par for the course when your body has some faulty wiring. In my experience, as much as I have wanted to bop these people on the head, I find that it is best to kill people with kindness.
It is dang hard.
These attitudes come from sensationalistic media and a general public that is ok being ignorant of things that dont effect them. And they hurt. They get me at my core. I would do anything for a warm, crunch, chewy french bread that didn’t taste of egg. To be able to go to any restaurant. To not need to sit near the door on the train so I can get off efficiently because I can’t stand on a moving train.
So I choose to find the strength to kill ’em with kindness. To educate. One person at a time.
And to find the strength to not bop them on the head.
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?
On the occasion of your thirtieth birthday
Dear Mary Fran,
This letter is coming from 1 year 2 months and 7 days ago. Not too long ago, but just long enough ago.
I am hoping a couple things for you by now. First, I hope that someone made you a fabulous gluten-free birthday cake this year. Because, really, birthday cakes make birthdays.
But there are some other things I hope you have learned, and accepted in the past year.
I hope that you have learned how to work with your body.
In case you need it, this is a reminder to love your body, even if it does have some faulty wiring. As I am writing this, you have been sad about losing the ability to run and workout intensely for far too long. It is never going to work the way it did before the pain. So I sure hope that you have moved on. It’s ok not to run. It’s ok not to be able to do Zumba or yoga. I truly hope you have found a way to get your physical strength back now that your spinal cord stimulator fixed.
I hope you have learned how to listen to the signals. If 10 minutes is all you can do on the elliptical, that is ok. I hope you have learned that it is ok to have to prioritize commitments. To not push your body to its breaking point. To have to pick and choose how you socialize so you don’t have to pay the price later.
I hope you have learned how to let people in.
You’ve been struggling with this one for a while, I know. You want MammaCakes to be ok, you’ve seen the worry on her face one too many times. Heard the panic when you call her because you are not ok enough to take a train. And I know that you have spent a long time trying to minimize those moments. But you have got to let people in. You can’t keep telling your friends that is nothing. They deserve the truth. You’ve answered the phone when they have needed someone, and I sure hope by now you have learned that it is ok to need someone else.
I hope you have learned that despite the pain you deserve to be loved.
This is the one that I know you are going to be struggling with for a while. I hope you have stopped thinking that you don’t deserve the kind of love that others do. I hope you haven’t settled again.
Remember how miserable you were in your relationship after the diagnosis?
How talking about the diagnosis was something that was avoided? When your boyfriend would barely hug you after you had your spinal cord stimulator implanted? When he didn’t want to hold your hand when you had an drug pump and tubing coming out of your spine? Or when he never once made it to the hospital even when you asked? And you stayed thinking you didn’t deserve more? That treating you like you were just tolerated when you were in pain was acceptable?
That he was doing you a favor by staying with you when you found out that you would be fighting for your body for the rest of your life.
I hope you haven’t put yourself through that again. I hope you have found someone who treats you so very well. Or if you haven’t, I sure hope you haven’t given up.
Dollface, you deserve someone who loves you, pain and all.
You are on your way to making peace with your illness and finally finding joy as I write this. And I truly hope you have gotten there.
And that you are still making delicious gluten-free baked goods
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: What’s your one, three, or five year plan for your Health Activism?
After my diagnosis, I let the pain dictate my life.
When I was in my dark place, I had the idea to start writing a food blog. To share my recipes and to have a place to document my trials and successes in gluten-free baking. The thought of health activism (or any other type of activism) was so far outside of what I had planned, that sharing my struggle with food and weight even seemed out of place. I was just going to write about food. Food that just happened to also be gluten-free.
And that was ok for a while. Because I wrote about food. Just the food.
And even if you consider a blog about gluten-free food a form of activism, for me it wasn’t. I wasn’t wildly passionate about whole foods or clean eating or paleo. I never discussed the why of gluten-free, just the what. Butter, sugar, eggs. Eating all the treats that being gluten-free had tried to ruin for me.
Because I need you to know that this whole activist thing is pretty dang new to me. And I’m not sure that activist is the right term for what I want to do.
Really.
Let me explain.
I don’t want to be a food evangelist. I don’t want to engage in debates about the evilness of gluten. I don’t want to go shouting from the rooftops that CRPS is a vile, cruel and heartless condition. I don’t want to keep explaining that the pain is not all in my head.
I want to show you that a diagnosis of an incurable and progressive disease is no reason to give up. That losing gluten isn’t so bad. That a cupcake or two is always a good choice.
I want you to have delicious treats. And I want you to see that life is a beautiful, wonderful thing – no matter what battles you are fighting. I want you to see that no matter what you can live with joy. I want you to see that anyone can embrace dancing in the rain.
Because the pain, it’s not taking over again. There’s a new sherif in town and its name is hope.
Someday soon I hope to write a cookbook. One filled with treats and eats. Share my joy with the world. It would be lovely if I could get a podcast with one of the best ladies I know off the ground. I have a new project in the works that is based on all of these positive posters that I designed.
But those are the footnotes.
The things that will happen because I showed you some joy. And some home-cooked comfort.
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: create a “care page” – a list of your best resources.
I really struggled with what to write for this post. While I write about embracing life and living fully while i chronic pain, I don’t give advice. I don’t have a library of essays on life with chronic pain. Nor do I possess the ultimate guide to living gluten-free. Sure, I have a resources page, but that is rather boring and utilitarian.
And I am anything but boring and utilitarian. I mean, have you seen my shoes?
So, as the world’s leading cupcake therapist (I invented that title 2 days ago…), I thought I would share a few prescriptions for hope and happiness. Because maintaining those when you have CRPS (or food allergies or celiac or any other condition that is part of your life) is incredibly important.
We’ll start with a positive thought. There is research about the power of positive thinking, and how framing your thoughts in a positive manner can improve your quality of life.
But that’s not everything- sometimes you need something more.
An aid for the times you feel like you just want to eat jelly beans because you have recently decided they are a food group
It happens to all of us. Ok, maybe just me. Just in case I’m not alone in this, I’ll confess that this is one of those times when broccoli is called for. And maybe even a green smoothie or two. Be kind to your body as often as you can manage, no matter how battle-worn it is.
For those days when you just don’t want to get out of bed
No matter your health, we all suffer a heartache now and then. And a good cocktail or two is good for the soul. So is selling ex-boyfriend jewelry (and maybe scoring something new for yourself).
And when all else fails, I get by with a little help from my friends, and I think maybe they could help you too.
My focus on FrannyCakes has always about living life without a focus on a condition or disease. It has been celebrating living with food. Sharing from my heart. Google is where I started when I was diagnosed and I know now that I should have jumped on twitter. Reaching out to real people, making connections and interacting with people with a positive outlook has made all the difference to me.
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 Wordless Wednesday with images that illustrate what my condition is like.
The black and whites are photos from a series of self-portraits I took in 2010, right before I was finally diagnosed with CRPS. The other two are from my Instagram feed and taken at a couple of appointments this year.
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.
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.
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.
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.
I put it out there. I am sickdisableda 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.
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.
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.
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
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?
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.
Ingredients
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
Instructions
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.
Add the stock to the pot, then add the lentils and ginger.
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.
Add spinach and cook for 30 seconds.
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?
