Tag: crps

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.

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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.

 

hawmcthanks

HAWMC Day 30: The end is here!

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 a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?

Well, I can tell you that I wasn’t exactly sure that I could pull this off. I have tried (and failed) many times to write a post a day. And this wasn’t exactly the ideal month to go for it – I had major surgery scheduled for the middle of the month.

But I did it. And it made me get my act together (I never had a resources page before this challenge, can you believe it?!).

Here are the highlights:

All in all, I learned a lot about myself and a met community of bloggers that I don’t often include myself in – health activists. I might do it again next year, but if I do, I will plan in advance and not decide at 10pm on April 1st that I should take on a month of daily posts.

Particularly when I have other posts that need to be written that don’t match up with the prompts (like my Gluten-Free Jammie Dodgers and my Snack it to Me series. I wrote 36 posts in 30 days.

I guess I can do {almost} anything. Thanks for sticking around and learning about CRPS, chronic illness and a positive life.

This week we will return to regularly scheduled programming with some more gluten-free snack mixes and this month’s Relish!

hawmcthanks

 

 

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HAWMC Day 29: A little bit of awesome sauce

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.

  1. 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…)
  2. 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.
  3. 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.

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HAWMC Day 28: Must follow

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 create a must-follow list.

I am certain that this prompt intends for me to share people that I think you should follow. If that is what you are looking for, check out my resources page or previous posts from the challenge.

If you follow anything at all, consider following this

You could call it a philosophy or a manifesto of sorts. Words to live by. Maxims for a better life.

When your body throws you a curveball and reveals that it doesn’t work the same way as others, or that it has gone to war on itself, it is easy to get lost. To struggle. To lose sight of the big picture.

But darling, it is all about the big picture.

Abraham Lincoln said “And in the end, it’s not the years in your life that count. It’s the life in your years.” Consider your chronic life just a part of the big picture. How you spend it despite the hardships is what matters.

So, here goes:

You should fill your heart with good and then follow it to where you need to be. There is no other kind of must-follow. 

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A much wiser woman than I can ever hope to be wrote these words, and they are rumored to have been painted on her wall.

“People are often unreasonable, irrational, and self-centered. Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyway.

If you are successful, you will win some unfaithful friends and some genuine enemies. Succeed anyway.

If you are honest and sincere people may deceive you. Be honest and sincere anyway.

What you spend years creating, others could destroy overnight. Create anyway.

If you find serenity and happiness, some may be jealous. Be happy anyway.

The good you do today, will often be forgotten. Do good anyway.

Give the best you have, and it will never be enough. Give your best anyway.

In the final analysis, it is between you and God. It was never between you and them anyway.”

-Mother Teresa

For me, these words summarize my personal philosophy. My own manifesto for living a better life. If I never follow anything else, I hope to say that, when all is said and done, I have lived my life anyway.

That I created. That I did good. That I succeeded. That despite a million and two reasons not to, I was kind. That I filled my heart with good and let it lead me.

i've loved the stars too fondly to be fearful of the night

HAWMC Day 27: What’s in a name

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:If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it?

I’ve thought about this one a lot. But mostly because I want to share delicious baked goods with the world. Baked goods that just happen to be gluten-free. Like many musicians, some days I feel that a self titled debut would be perfect. But then I am always led to the never quite answered question:

What is a FrannyCake?

I think a question as a title is perfect (hint hint to all of you literary agents that peruse this little blog). It sets up a story. A journey through what I know best: gluten-free baked goods.

I could bring my cupcake therapy to the masses! I could teach others that they don’t have to eat cake made from box mixes that taste like chemicals (please say no to Betty Crocker – there is no excuse for chemical flavored cakes, these days there are several gluten-free mixes that even I think are great).

I can show how I have never suffered when it comes to food. I can show you the hope and happiness that can fill a gluten-free kitchen.

i've loved the stars too fondly to be fearful of the night

The Chronic Positivity Project

This is actually the title of my upcoming web project (submit quotes and ideas here), but it is the framework that I build my life around. I had an unexpected realization about not being able to ride a bike again. Not that I did that often before, but the thought of never being able to do it again is a bitter pill to swallow. I embraced the sadness for a moment. I let myself mourn the loss. And then I looked for my silver lining.

I have to frame my life this way. If I didn’t, there would be days lost to wallowing. Days lost to crying over the never-agains and the never-will-bes.

As a book, it would be all about the strategies to make these things happen, as a web project it will be all about sharing inspiration for a positive life with everyone who needs it.

If it werren't for hopes, the heart would break

HAWMC Day 26: Stop wishing, start living

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 how you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?

I find that this is a slippery slope. Looking at the what-ifs. Longing for a past that wasn’t. Grasping at a future that very well may not be.

Don’t get me wrong, I am full of hope. I am optimistic. Someday, someday.

But hoping isn’t wishing. It is having faith. An idea. A light to guide you through.

Thinking about what I would do with a pain free day? I had plans in life. I had things I liked to do. But my past has colored my future.

It is very likely that I will never be able to ride a bike again. Or to live completely on my own. I will definitely never run again. Learning Irish dance? Nope.

And wishing for these things is not going to bring them any closer to me. 


If it werren't for hopes, the heart would break

So, I am not going to tell you what I wish I could do. I am going to tell you what I am striving for. Where my hope and faith are taking me.

I am looking into writing a cookbook. Or getting one of the children’s books that I have written and illustrated published. I have started working on a new project that I can’t wait for the website to be finished so I can show you. I am going to be the best dang web designer that I can be. And I am going to bake. When I feel good, I am going to try new things (that culinary bucket list of mine just keeps growing). When I feel bad, I am going to make recipes that I know by heart. 

I am going to live fully. Love completely. Fight fiercely.

Who’s in?

Two Shorten the Road

HAWMC Day 25: Lessons from 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? Today’s prompt is to share something you learned from another Health Activist (Share their name/blog/website!)

I am still a bit worse for wear from my surgery, so I am probably going to keep the rest of the HAWMC posts short, sweet and to the point.

Two Shorten the Road

Two shorten the road.

(Irish Proverb)

Being sick or in pain is a tremendous load. It can tug at our hearts and hang a cloud over our heads. It can slowly pull us away from loved ones.

A partner can help you navigate. Lead you through the rough patches. If there is something that I have learned from the wisdom of the peoples of the internet it is just that.

Reach out. Ask for help. Do not let yourself end up on an island.

It can be your mom. Your sister. Your best friend. The who doesn’t matter. Just that you let them hold your hand. That you let them in.

It’s a long journey, but when shared with a friend, the time will pass just a little bit easier.

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HAWMC Day 24: Nearly Wordless Wednesday

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 create a Pinterest board that shows your health focus and share an image of your board.

A group board that is full of positive energy:

 

A board full of gluten-free treats:

 

A board all about inspiring stories:

 

 

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HAWMC Day 23: Yes, I’m a cyborg

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).

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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’m a proud cyborg. And don’t you forget it.