Brave Heart, Brave Soul. She who is brave is free.

  Let's get real today!  Be genuine and authentic. Speak truthfully, wholeheartedly with intention. If you're a spoonie, you probably know where I'm heading. If you're not. Pull up a seat, sit down and join the conversation. There’s a lot here to unpack. Ok, my question today, if you're dealing with any form of chronic illness, is this. How do you deal with family, trolls or outside influences who call you a phoney? Every spoonie has a muggle in their life or two or three even who invalidates their illness.Those who make it abundantly clear you're putting on an act.  You don’t even have to think about it. Names are already coming to mind, aren’t they? Let’s face it, you know the drill. It's an old routine and we all know how it goes…You need attention. You're dramatic. There’s nothing wrong with you. Oh and my personal favorite....you're faking it.  These kinds of people can’t grasp how you can actually be THAT sick, at all. I mean, come on. You don...

  So, what does it mean to be chronically ill? What’s a spoonie? And what the heck is spoon debt?  Why are some folks called muggles and what exactly is mu ggle sick? Well, those are all pretty good but loaded questions to be fair. I’m no expert, but I am familiar with the lingo. Why? I’m a spoonie. Not a muggle. I have sick days and I have good days. I have flare ups, brain fog and just plain I can’t days. Truth is I’m long past muggle (normal) sick. And no, I don’t look sick to most people. In fact, if you’re not inside my inner circle you’d have no clue what it takes just to get up and out of bed most days. Not to mention the energy required for a shower. I go into spoon debt often. If not daily. I’m always borrowing spoonfuls of energy from one day to get through the next. Hence the words, “spoon debt”. And no, I never quite catch up.   My tired isn’t muggle tired. When I say I’m drained I don’t mean a long day, a few hours of sleep kind of worn out. I mean somet...

  "When you have a rare disease you face two battles. One being the illness itself. And the other, living in a world where so few people understand what you're up against." ~ Unknown.  Let's talk about perception, reality and chronic illness.   Can we just be honest? Let all the pretense go? Chronic illness is one of those things that most people don’t ”get” till they “get it”. And let’s be brutally blunt now. What so folks think they know isn't always what's actually going on. You know what's happening to your body. I mean it's happening whether you like it or not, right? Yeah, you know. And your doctor knows but  there's a particular kind of person whose perception doesn't quite match our reality. Whatever your real life is doesn't hold water in their eyes. You're making it up. Being dramatic. You just need attention. And sadly, that becomes the narrative.  I don't know why so many folks these days feel they’re adept at diagnosing...

  “I will see you in Valhalla. I am a warrior. I will always be. For when my time comes, I will not beg for more time to pass. We are all fated to die on a certain day. I know there is no bravery without fear. Live for each moment as if it were your last. When I leave this world, I will smile. For there are many things for us to discover on the other side of the shield wall...” ` Lagertha    In 40 years of living with chronic illness I’ve watched my body slowly and then quickly fail. I’ve seen my vision fade, my heart weakens, my lungs stall, and my kidneys live day to day on the brink. I could go on and on, spill the beans on how my body has given up the ghost but what’s the point? We all eventually decay. The cost of living is dying. In the end no matter who we are or what kind of life we’ve lived; Death will not be denied her toll.     Dark, I know but Death comes for each of us, sooner or later. She is impossible to avoid or keep at arm's length forever...

“The strength of my soul was born on the backs of moments that brought me to my knees. “~ S.L. Heaton I was born with a fiery passionate flame. It raged in my soul. I longed to jump off buildings, swing from vines, wield a sword, build a lightsaber of my own, pursue the truth with Wonder Woman’s lasso and pretty much set the whole world on fire. From the time I can remember I’ve been this weird mix of introvert and extrovert. I can be both timid and unreserved at the same time. Red hair aside, most days I’m a quiet fighter. Now don’t get me wrong. I’m far from silent or stealthy. I could never in a million years be a ninja. Try as I might, you can hear me coming a mile away. I’m not loud per say, I just don’t have a mute button. My daddy can and will attest to this fact. After all, my nickname growing up was motormouth. I mean who could blame him? I was always talking. I always had a story to tell or a question to ask. As a little girl I’d spend hours sitting with my d...