Life is about more than cookies and doughnuts. It is about hope. Positivity. Friends.

Life is full of things. Big things. Little things. Job things. And even cat things. Life can always use more cat things.

This is a story about one of those things.

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.

But I promised I was going to fight harder this year. So I am doing ketamine infusions.

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.

I want to come out of hiding. Sure, I’ve told you I am sick before, that one time I had to defend myself and my decision to use Western medicine as my main form of treatment.

I have never read so many kind words.

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.

Thinking hurts. Being hurts.

Raging, burning, searing pain. Pain that is worse than getting a finger chopped off.

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.

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?