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.
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.
Because this is my story. The friends and the family. The triumphs, the trials and the food.
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.
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 share three things you love about yourself, things you’re great at, or just want to share.
I can always find a silver lining. I can make lemonade from lemons. Heck, I can turn the beat around.
Lame pun, I know. But you should expect that from me.
Do those count as the three things? I thought not.
I speak French fluently. Bet you didn’t know that. Since moving back to Chicago I have had few opportunities to hang out and be a language nerd, but I still read novels and listen to podcasts in French daily so I don’t start to forget. It might be my favorite hidden talent. (It is even more awesome than the bar tricks I know…)
I can {almost} always find a silver lining. The time I got dumped because someone thought I spent too much on shoes? Well, at least I had the shoes and the couple of dates had decent food. Or going gluten-free. It not only improved my health, but it found me some of my best friends.
I am a pretty good designer. Last week a site I did the design for was mentioned in the Wall Street Journal. One of my presentations from this year was featured on a design inspiration site. My office even hung some of the posters from my first Chronic Positivity project. (Although the one below wasn’t chosen, it is still one of my favorites)
Ok, that wasn’t so hard. And sorry about getting that song stuck in your 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? Today’s prompt is to write about how technology has played a part in your treatment.
So, you follow me on twitter. Or maybe instagram. And you saw a tweet. It mentioned a surgery that I hadn’t told any of you about. In fact, outside of my family, coworkers and friends I considered to be close, I didn’t tell anyone. Not because I didn’t think that you should know, but because I didn’t want to share too soon.
Because I didn’t want to jinx it.
You see, I am a battery-operated, remote-controlled human. Which makes me part robot. Although, I am less robot than Cybermen and the borg. And more human than the Cylons. (I sure hope I got enough sci-fi references in there to maintain my nerd status).
I have a device implanted under the skin on my back and it runs from my left hip to my spinal cord. It’s called a Spinal Cord Stimulator.
The SCS works to interrupt pain signals from my leg to my brain. It is kind of like a pacemaker, an insulin pump or a replacement joint. A man-made contraption designed to improve my quality of life. Once a week, I plug in and charge.
A year and a half ago, I took the plunge and had it implanted. Between October of 2011 and March of 2013, the wires that were tunneled into my spinal cord came loose. One even moved so far that it was just free-floating below my skin.
So, last Thursday, I went in to be rewired. I left with an upgrade
You see how I could not want to talk about it, right? A surgery so filled with promise had already gone awry once, I just wanted to wait it out. I was managing my own expectations. And I was trying not to panic. Or worry too much. That’s what I have Mammacakes for.
So, after little more than 2 hours of sleep, at 4:15 am, in epic flooding, Mammacakes and I made the drive to Rush. We made it through admissions. And the pre-op waiting room. I signed waivers and medical history forms.
And I waited.
A familiar face came by while I was waiting for the rest of the operating room staff to make it in (I did mention the epic rains, right?). It was the rep from Medtronic, the manufacturer of my SCS. She left to get the lay of the land (she normally works out of the hospital I was at previously), and I could overhear her talking to my doc.
They had a new offer.
They were going to be making the cuts anyway, so they offered me a new SCS. A fancy-schmancy one that could remember how I like it set in different positions. It will change when I lay down and sit up. If I roll to my side. Um, of course I wanted the new model! And then started the parade of residents and fellows in pain medicine. Each one of them made a point to tell me that they had never seen a stimulator have that kind of movement.
Surgery went smoothly and I am recovering well. Over the next few months, I will continue to heal – although that means no baking on my own for a while. But that’s ok, because this time, the stimulator seems to be working correctly.
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.
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 giving advice to caregivers.
Advice the only way I know how to give it, as a recipe.
A recipe for good care giving
Ingredients*
A healthy dose of love: This can be any kind of love. Parental love, sisterly love, the love you have for a friend, truly-madly-head-over-heels love. Maybe even tough love. With one condition, it must be unconditional.
Plenty of patience: You might have to look around because patience, although a virtue, can often be in short supply. This is one of those items that you just have to splurge on. Top shelf patience is rewarded in multiple ways – better communication and understanding are just a few. There are waiting rooms to be endured. Test results that just won’t show up. Panic from the patient about any number of things. Rescheduling outings and appointments. This particular ingredient has the power to transform a patient’s experience.
Sweet Tarts: Some people might argue with me on this one, even though I am certain I am right. After multiple procedures, hospital stays and general bad-health days, I can tell you, most assuredly, that if you show up with some Sweet Tarts, you have already shown you can take good care of me.
*MammaCakes always says that the path to hell is paved in good intentions. Those pesky good intentions. They aren’t really good in anyway, other than to make the intend-er to feel better about their lack of action. Never substitute good intentions for one of the above ingredients.
Method
Gently stir the ingredients until they come together. Being gentle is the key. Words should be used to encourage and inspire, not chastise or shock.
Taste and adjust. Some days you need more love and less patience. Some days you need the opposite. Some days call for tough love. Some days call for a hand to be held. The best care is always evolving.
Bake. Time is important. It might be the single most important way to show you care. Make time to do things that are not related to the illness. Make time to sit and talk. Make time for yourself. As important as it is to make time for the patient, their needs cannot be allowed to consume you.
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 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?
