The first post was from about a year ago, we were well on our journey already, however that’s when we started to look for answers beyond our home town of Cleveland, Ohio. This is the story as we remember with little notes and updates we’ve already had done throughout the last year. Some stories of before everything went to hell, and new things no one knows. Full of ups and downs, heartbreak, and hope. Our lives have not been easy, trying to identify an invisible illness; let alone treat it. This will include doctors notes, videos, many pictures, and hopefully shed a little light on what happens not only to Bella, who’s the true hero in all of this, but what occurs to so many people in what to the outside seems impossible, yet every day is a struggle.
On the outside she’s perfect. Beautiful, intelligent, and vibrant. It’s what she shows to the outside world, when she can, because it’s better than pity or people looking down on her. She has about one or two good days in a month, and tries to live them to the fullest. The rest are filled with pain, and barely being able to get out of bed. On the inside is nothing but pain constantly, high heart rates, infections… Yet she’s vigilant in trying to figure out whatever it is that’s so debilitating. The things no doctors have been able to figure out so far.
So please, read carefully and try to understand. Life for us is a constant balancing act of meds, fluids, electrolytes, misconceptions, misdiagnosis, and luck. We’re still searching for answers, a root cause. Join us in our journey, and please understand we’re fighting as hard as we possibly can.