Converse and Twilight Tees....

Another day of life. Another day to call my own, or His own.  Today is my birthday. And rather than go out and see the world, the reality is that my true wish is to just stay home. Relax. Be a lazy being, without the need to tackle my support hose.  As this year started, I remembered a saying I once saw. "Pain deserves to be felt." As a spoonie, pain is not a stranger.  It is present in every second of our existence. Managing the pain, being able to dull our pain and still exist is a challenge. So how do we deal with the pain? Vices. We all have them. Whether it's a routine, yoga, cooking, specific diet, blah blah blah.  Yes these are MY vices. But I find that my whole world melts when I am in the kitchen. With a recipe in hand, I can conquer the world...or so I feel that way. So whatever it is that brings you to your happy place, go there. Full steam ahead and a cheesy smile on your face. You see, in this world of disappointments and pain, a smile will always be the most contagious thing you could offer them. Shine on my fellow Spoonies. 

Head, shoulders, knees, and toes...

"🎼Head, shoulders, knees, and toes, eyes and ears, mouth and nose ..." For a Spoonie this is more than just a children's classic tune. It's our reality. The reality that a flare will hit one or more of these body parts. What happens when that Mack trucks hits us head on, but life around us keeps spiraling like a tornado? Answer....there is no right answer. The way we deal with flares, stress, new diagnosis, and the inability to do daily activities, shows our inner strength. But a new strength needs to be found when this disease starts to affect your organs. Research suggests that when this happens the disease starts taking on its own face. It's like it's own "unwanted friend" rearing its ugly head in every aspect of your life. Suddenly you have to switch gears again. The "new normal" begins to take shape. You go from walking canes to support hose in the blink of an eye. Your stomach deceives you every chance it gets. And if you sneeze too hard, be prepared to pop the blood vessels in your eyes! But nothing compares to having to work against your own body day in and day out. Remembering that our strength comes from the Lord should be our daily motivation.