105 degrees and you're bundled up like its a snow storm

The sad thing about RA/ Fibro/ or any chronic illness is that it doesn't travel alone. You often find that once you have one, you start to pile them one like links in a chain. Raynaud's syndrome is common to have as a Spoonie. Raynaud's is "the inability to regulate your body's temperature correctly (my definition)." So when you get hot....you literally start to boil over, headaches, severe redness, and severe swelling. When you get cold, you get a frost bite feeling very quickly, numbness, stabbing feeling in your finger and toes. And heaven forbid that you go from one extreme to the next very quickly. The pain, the flu like symptoms, the chills...torture. I give this background because people often don't understand why I have on a scarf in the summer, or why I wear a jacket year round. Sometimes it's just easier to look funny than to explain it over and over again. Most importantly, it's about my survival. If I know that I will be going in and out of different temperature rooms, I just dress warm. Sure, the chance of me getting sick is higher...but the pain of temperature change is worse than an upper respiratory infection. Learning which way to tip the scale is the key to survival.   

What happens when your word betrays you?

I have always stood by the principle of your word. Your word is all you have. If there is one lesson that my kids remember I hope is is about the value of your word. But, as this disease progresses and takes on s new form, so does the ability to hand out the promise of your word. Your every move is calculated, precise, and completely thought through. Like an intricate game of chess. I was always amazed on how my children could sit down at the chessboard and before I thought of my first move, they both had the ability to tell me how they would beat me in 4 moves or less. Chronic illness is just like that, before we give our word, we must think about all of the possible outcomes and downfalls that we could face. Remembering to use "just enough spoons" so that you can keep your word is the greatest juggling act we will preform; however, if we succeed we will prove victorious once more. 

Masks and the life of a Spoonie

Being a Spoonie means that we become a master of wearing a multitude of masks. Masks that hide our true identity. Inside we are full of pain, we struggle with the reasons on why we are dealt this life. But we are never really able to unmask our true identity, except to those who see us when we are at our weakest. Those who see us struggle, but can only be a bystanders to the horror we live through. They see, empathize, but never fully understand the how's and whys. I see people live with chronic illnesses differently. I like to think that positive thinking and a specific diet can help your chances of being successful. But not all of the time does this stop a flare from happening. That's when I like to think of myself as an artist. I, myself, try to juggle the most important things first, and then scale it down from there. Lessons...lessons we learn the hard way to let it fall by the wayside. Survival becomes the most important. Everything else is just background noise. Learn to smile when pain is low, learn to lean on your support when pain is high. Life will only go as fast as we allow it to go. C'est la vie! 

Hope is more than just a four- letter word

Hope. Hope for a better tomorrow. Hope for a cure. Hope that maybe this disease doesn't get the best of us. Hope that the next time I need to open a door I will have the ability to successfully turn the knob. Because how shameful and embarrassing is it to always ask for help. To stand in front of a door or a jar of sauce knowing that at that precise moment this object has triumphed over me?! I can recall many moments such as these. Moments that typically an average person doesn't deal with. Moments like these that make us who we are...fighters. Sometimes that battle is just harder to fight. Sometimes medications designed to help slow the process have become complacent within our own selves, and instead of helping the disease have become a hindrance. Which is where we circle back to hope. I hope that this disease doesn't get the best of me. I hope that I can help others. I hope that one day there will be a cure. I hope that they will continue to make breakthrough meds to help with pain. But for now, I will cherish my time here on earth.