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.
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.
Today’s loose interpretation of the rules is bringing you one of my favorite quotes from my favorite TV show. Because it exemplifies the attitude that I strive for every day. Look on the bright side. Stay hopeful. Keep on dreaming.
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.
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?
