Out Loud.

This is just the person I am. I have always lived my life out loud. I feel that over time I have been given specific stories to tell; maybe this is just what this is too.

There is always so much going on inside my mind that if I had the energy to sit down & write daily there is no telling what you might find here in my little space of the internet. I fight daily with the me I have always been against the monster that now lives inside me & attempts to take over my body.

Do you know how many medical professionals I have encountered since my diagnosis of Complex Regional Pain Syndrome (CRPS; also known as RSD) that have zero clue what this is. The common response is, “I have never heard of that before. What is it?”

It shocks me. This disease is ranked so high {at the top} of this scientific pain scale they have yet there is zero awareness of it.

Let’s also note that their cluelessness is evident as they grab and touch my foot like there is nothing wrong & I quickly jump and hold in my scream as I pull it back to explain it to them again.

So, maybe this is another one of those stories I am supposed to live out loud to help bring awareness.

Or perhaps it was just to open my eyes to an entirely different world.

You know the famous Nike slogan, “Just do it.” I would like to call complete bullshit on that line. Because for so many people, we simply cannot “just do it.”

Or how about, “Pain is weakness leaving the body,” if this was the case I would be stronger than most people I know. Instead, I lay in pain & all my strength is leaving my body.

Let’s also talk about how we all have a choice on what we eat. Actually, false again. For some people our bodies will not allow us to prep foods or stand in the kitchen to cook a healthy meal. Sometimes what we consume is whatever others feed us or whatever we can grab within seconds when the nauseous feeling sets in.

We do not all have a choice. We live our life with zero control over our body. We don’t know if we will be able to walk to the bathroom in the middle of the night or if we will need to grab our knee walker. We have no idea if we will be able to put on real clothes in the morning or even get into the shower. We have no idea when the pain will set in or how strong the mental fog is going to be.

But also, when we get that extra hour to ourselves in the middle of the day chances are high we will use it to rest our bodies versus working out.

Because we simply cannot “just do it.”

I still mourn the loss of the “me” I used to be. The super energetic one who NEVER napped, who got up at 4:30 in the morning to run, who could cook healthy meals, and who never had to ask for help.

In her place is a new “me” who sleeps until 11:30 because she hasn’t slept well in nights. A me who is constantly reaching out to her village to help out. A me who struggles greatly to cook much. A me who hurts all the time.

A me that went in for foot surgery and then had to have additional surgery and has now scheduled a consultation with a surgeon for a Dorsal Root Ganglion Stimulator per the recommendation of her pain management doctors.

So, no this me cannot just do it, she does not have much control over her body daily but damn it she still smiles. She is still positive about life & what is ahead of her. She is getting stronger daily for fighting that monster that is trying to take over her life.

But also, she is living her life out loud & is committed to raising awareness for a rare disease that can spread throughout one’s body & be completely debilitating & has caused many to a life in a wheelchair.

I don’t want your sympathy; that is something I do not need. But, I want your support, your love & your understanding for those who live life with what is often an “invisible illness.”

Until Next Time~