Tag: rsd

Life with a rare disease

The Pain of Rarity

This hell? One in a million.

Technically, it’s more like 26 in 100,000. (For reference: a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000, in the USA when it affects fewer than 200,000 Americans at any given time).

I don’t know how to write about this disease without it sounding like a melodramatic Thought Catalog piece. A bit of pain. Some pithy statement about rarity and diamonds and blessings. Maybe a little angst (perhaps anger?). And ending with hope. Sometimes that hope is real, sometimes it feels a wee bit disingenuous. Today, February 28th, is Rare Disease Day, so please indulge me just a little.

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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.

 

meandemily

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.

RECIPE FOR CARE(giving)

HAWMC Day 9: Fresh-baked Care(giving)

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.

RECIPE FOR CARE(giving)

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.

My spirit animal is a dashboard pig

HAWMC Day 8: My body is ridiculous

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 about the animal that represents your disease.

My disease is no animal. Allegorically or not. I tried to tie it to food. To animal crackers. To a fable or proverb. Anything.

And then it hit me. I suffer from creepy dashboard pig.

dashboardpig

(Yes, I took this picture in my sister’s car. And, no, she probably will not be super pleased that I am making this analogy.)

Please, just hear me out.

My body is ridiculous. It doesn’t do what it is supposed to. Some nerves think that every signal should be a pain signal. And not just any pain signal. Intense stabbing, searing, burning pain.

My body is ridiculous. It hates pants. It hates gentle breezes. And it really, really hates anything that is different than the minute before.

My body is ridiculous. There are some days. Some precious days. Where the pain calms down to a simmer. When I can hope that those nerves have just had enough. When there is dancing and and being silly.

My body is ridiculous. It requires a battery pack, a remote and supplemental wiring to make it through.

My body is ridiculous. The disease has no purpose. There is no battle to be won. No invading microbes to be beaten. No warnings it needs to pass on. The disease isn’t there to take over or to change things. And yet, it stabs and slices. It burns and burns.

My body is ridiculous. It can’t seem to make the CRPS realize it has overstayed its welcome. Like that creepy dude you went to dinner with. The one who kept extending the night.

My body is ridiculous. And the best analogy I could find was a wiggling pig dashboard ornament. A ridiculous beast with a giant knife. Existing only for stabbing and slicing. Hanging around like the creepy dude who didn’t get the hint.

 

strength is something you choose

HAWMC Day 7: Sensationalize!

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

strength is something you choose

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.

HAWMC Day 6: Letters

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

-Your 28 going on 29 year old self.

 

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HAWMC Day 5: Aspirations

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.

Until I mentioned my chronic pain. It was the day that this whole blog changed.

Why on earth am I telling you this?

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.

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Because the pain, it’s not taking over again. There’s a new sherif in town and its name is hope.

he who has hope has everything

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.

Every day may not be good, but there is good in every day

HAWMC Day 4: I care about you, so here’s the secrets to life

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.

Every day may not be good, but there is good in every day

But that’s not everything- sometimes you need something more.

Like a cupcake. Or broccoli.

An aid for someone newly diagnosed

I’ve said it before, and I’ll say it again, cupcakes have therapeutic properties, and they are particularly useful when you are newly diagnosed and have turned to google for the first time. Then find an organization that works with your condition and start making connections

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

First, acknowledge those feelings. It’s ok to be frustrated and loving the comfort of your bed. Then get your booty up and get going. A good breakfast can do wonders for that feeling. So can reading a blog full of positive thoughts. Or getting a lecture from Kid President.

An aid for when you have to be awesome and you feel just ‘some’

Take a deep breath, and then make some brownies. People always love them, and you are automatically awesome. If you still need more ‘awe’, you can always turn to the internet to tell you that you rock.

A prescription to heal a heart break

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.

friends

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.

Erica, Celiac and the Beast

Gluten-free real talk, product reviews and overall awesomeness.

Brandy, A Spoonful of Wellness

The sweetest celiac on the planet. An RN and a pageant queen.

Alison, A Girl Defloured

Fresh & easy recipes. A love of cocktails. A killer sense of humor.

Candice, Embrace GFree

Celiac with CRPS. Sweet, funny and informative.

Aimee, The Healthy Apple

Gluten-free clean-foods. An honest struggle with chronic pain and illness. Food as medicine.

KC, The GFree Foodie

Full of food. A healthy dose of humor and honesty when it comes to living with celiac.

Danielle, Project 3×5

(Ok, so I don’t know her in real life, but she is the only CRPS blog I follow religiously).

Crazy positive, full of hope. An honest account of living better with chronic pain.

If you are still looking for more

For a more complete list of blogs & organizations sorted in a useful manner, check out the resources page.

 

 

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HAWMC Day 3: Wordless Wednesday

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.